Newcomer’s Story – Thanks for listening :-)

[Jamie]

OK – I’m getting ready to ask a very important question. Please don’t judge! What is the importance of changing your diet to gluten free, dairy free, and sugar free? I read a lot of conflicting material regarding this. Yes, for some people it is appropriate – for example celiac disease. For others, it really serves no benefit. As CPT, I have always stressed with my clients the importance of balance – living and eating in balance. This is how I lost 115 lbs to begin with! Balance in the kind of foods and amounts. I don’t adhere to any certain diet, but I make every effort to eat balanced. I’m just wondering where everyone gets the information that a gluten free, dairy free, and sugar free diet is the answer to rheumatoid arthritis?

[MarlaCL]

Hi
What is CPT?
This is a question that I am not an expert in however all the research I have done over the last few min months point directly to eating those 3 categories are all unhealthy inflammatory foods! Everything processed is bad for you and your gut where all disease begins.
Watch the documentary What the Health
Endless info on podcasts Dr J Axe , Dr Amy Myers, Dr Terry Wahls and so many more.
Do you have scleroderma ? All dairy products and meats are all injected with horomones, antibiotics and pesticides. It’s awful the food industry. I ate all my life an unhealthy diet lived on carbs, dairy , and chocolate bars. I was never overweight. My body has adapted easily the past 3 months to this lifestyle.
There is too much evidence proven that it’s the only way to go for autoimmune diseases and anybody trying to achieve good health. Zero alcohol ( never liked it) and some mornings half a cup of coffee. Juicing veggies daily for years and even limiting fruit due to high natural sugar content. I am hoping to see changes for the better like so many millions on the internet have experienced.

[Spiffy1]

Gluten is an indigestible protein. The protein in dairy looks similar to gluten proteins. People with autoimmune issues do not need more confusion in their system. Many people do not realize the importance of this. If you have autoimmune issues it is likely you have an HLA pattern that is also gluten intolerant. They go together. For instance I have the DR4/DQ8. Hence I am having to hold back RA (DR4). I am doing this by not aggravating my DQ8 celiac gene. Do I have celiac? No one in my family has ever gotten a proper diagnosis. I gave up gluten before being tested. Has my health turned around by giving these things up? Absolutely. And don’t be one of those that gives them up and three weeks later you say it did not help. I gave them up 2.5 YEARS ago and I am still healing. But healing I am or at least holding back the inevitable. I have no doubt in my mind if I had listened to my doctor and believed diet did not matter that I would be in complete body breakdown by now. The minocyclene and the LDN would not be able to heal as they are without a diet change. Pain is a powerful motivator. Those delicious bagels lose their power after about 3 weeks of seeing them for who they really are. I cannot hardly look at a glass of milk or cinnamon roll. I used to live on organic wheat and organic dairy and it got me to the lowest point in my life. It is a battlefield in the kitchen whether you choose to realize it or not. You also have MTHFR most likely as well. First thing they tell you to do is give up gluten and dairy. Try it for 6 months and if you can honestly say you don’t feel better then it either means you were getting cross contaminated or was not completely dedicated or among the minority that diet was not their trigger. However, if those people who say diet is not their trigger yet they are still having symptoms makes me wonder if they are just hoping diet has nothing to do with their problem. Very few people will reach complete remission to include blood work without making dietary changes. Yes, I know Dr. Brown did it without diet changes but the food is not the same today as it was yesterday. 30% more gluten, more pesticides, more everything than used to be. I hope this helps you see my point of view. In my opinion, it is the single biggest factor you have control over.

Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWF

[Maz]

Jamie wrote:

I’m just wondering where everyone gets the information that a gluten free, dairy free, and sugar free diet is the answer to rheumatoid arthritis?

Hi Jaime,

This is a very good question and one that is probably unique to every individual. You’ve already had some great answers and been offered some useful resources from Marla and Spiffy. In addition, I’d just add that there is some science to this and the connection to all these food offenders is how they can contribute to leaky gut, causing cellular cross-reactivity (some foreign proteins look like our own cells):

Gluten, Inflammation and Leaky Gut in Rheumatic Diseases

Sugar, of course, is just “empty” calories, with no nutritional value and may also promote cancers and feeds inflammation-causing organisms (e.g. candida) in the gut. Inflammation in the tight junctions of the gut leads to microperforations and candida grows by rooting itself into the gut lining – unpleasant. As antibiotic therapy can reduce candida-controlling microbiota, it just doesn’t make any sense to feed the whole process and waste good money on promoting good bacteria (probiotics) while also feeding the bad flora and fauna in the gut.

Dairy is known to promote mucous (and, hence, biofilms) in the airways, which is why asthmatics and cystic fibrosis patients are advised to avoid it. As rheumatics, the lungs are important to protect, so some folks find it helps their lungs not to feed organisms (e.g. mycoplasma pneumoniae) that can reside chronically in mucous membranes. Dairy also contains proteins, like casein, that are inflammatory (causing gut mucosal reactivity) in some folks.

Not everyone is sensitive to gluten or dairy, however, so some people will get sensitivity testing run through a specialty lab. Others will save themselves money and just start doing an elimination diet (like Spiffy outlines), trialing the elimination of one food at a time and then reintroducing it after a period of time to see how they react (bearing in mind that some people are sensitive to different forms of gluten). Overall, though, it’s just worth eliminating simple sugars entirely, if possible, and trialing being gluten-free and dairy-free for long enough to allow the body to eliminate these proteins from the body (3-6 months).

Other dietary offenders for some folks are the nightshades, but these are particularly a problem for people with reactive arthritides, like psoriatic arthritis or ankylosing spondylitis as a major microbial offender (klebsiella pneumoniae) feeds off starches.

It’s really a question of finding what your body likes and doesn’t like and sometimes it’s even worth going completely “clean” in the diet. There has also been a good deal of critique of modern mass-farming methods whereby grain crops are slathered in herbicides and pesticides and, when we eat these foods, we’re being contaminated by these chemicals, which may be triggering these sensitivities. E.g. some of these chemicals contain dessicating agents, to prevent mold growth, and this type of chemical may be drying up the mucous lining of the gut, leading to gut overgrowths, inflammation and leaky gut. So, it could be argued that it’s not the wheat or its proteins in the first place, but that sensitivity arises as a result of the damaging effects of chemicals in the human gut and these proteins leaking out of the gut and being seen as foreign by the immune system. It’s still controversial and lots of folks are reluctant to give up the foods they love, but it’s an interesting topic to research and decide for one’s self.

[Lynne G.SD]

Here is some good info on Lectins http://www.precisionnutrition.com/all-about-lectins
I don’t dare eat dried peas,beans or anything “soy”.Funny that green beans and peas are just fine and no problem with sea food either.

[Linda L]

I lost a lot of weight and cannot gain it back. First time I was on a diet three months only /gluten, dairy, sugar free/ and then I lost a lot of weight. I felt better but I was taking Prednisone and Methotraxate that time, so I wasn’t sure if diet helped. Today I have been on a diet more than six months. I take Oroxine for thyroid, Mobic from time to time /twice a week/, vitamins and minerals. I don’t take any anibiotics now. With the second trial it was very difficult at the beginning. I was hungry all the time and I had a feeling I was starving. I am gluten, dairy and sugar free. I have meat sometimes /lamb, beef, chicken/ and sometimes eggs. I can say now that I have adjusted to this diet and some members of my family have made changes in their diet what has helped me a lot! I am a more than 20 years RA sufferer. Only now after so many years I have noticed that my blood/urine tests have improved. Red cells, iron, inflammation factors look better. Mobic when I take it now seems to be more powerful than before. I don’t take any painkillers anymore and my asthma nearly has disappeared. I don’t suffer from hair loss anymore.
I am surprised. My fingers are still swollen and my knees are sore when I stand up. There are better and worse days but generally it is better. I believe that here are so many nasties in our food that we are being poisoned with its toxins. Also we don’t get enough vitamins and minerals.
There was an article in our paper here years ago that the Australian oranges had lost 50% of its vitamin C within 10 years!
My last tests /every 3-4 months/
ESR 68 59 34
CRP 80 74 67 still too high…..

RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygous

[Jamie]

Good Afternoon – I’ve wanted to reach out to all of you for some time, but I guess I have been depressed not understanding what is going on with my body. I find myself running from one thing to another trying to figure out what is going on. If you remember, I posted this original thread, as well as updated. I am still working with my PCP. I’ve taken 100mg Minocycline twice a day M/W/F for 9 months now. I have had a few Herxheimer reactions. Overall, my joint pain, stiffness, and swelling has improved. Some days are certainly better than others. I also take 200mg Celebrex twice a day, Estrogen 1/2mg once a day, and Cytomel 25mg once a day. After being on the minocycline for about 6 months, my PCP ask me to have some blood work done. He and I were both shocked because my R Factor dropped from 20 to 13! I have NEVER from the beginning had any positive inflammation markers and the blood tests revealed this continuing result . . . except for Reverse T3. I found this out because of my quest to find out why I was rapidly gaining weight. I have gained 41 lbs in 4 years!! This is TOTALLY unexplained due to the fact that I am an avid exerciser and eat an average of 1600 calories a day. Doctor’s originally told me that weight gain was not a symptom of RA, but weight loss was. They began checking my thyroid levels. Although everything appeared to be WNL, I paid on my own to have thyroid tests done which included Reverse T3. I got hooked in with the Stop the Thyroid Madness group. To my astonishment, my Reverse T3 ratio was quite low – which among a few things, means inflammation. Usually the group suggest that you deal with the reason for the inflammation and then use Cytomel (T3) to clear the Reverse T3. The way I looked at it, I WAS dealing with the inflammation issue! When I brought these results to my PCP, he was open to trying Cytomel (T3) with me which is a way to clear Reverse T3 from my body which might unblock the weight gaining problem. Well, months went by and the only change I saw physically was increased weight. My Reverse T3 ratio has raised above 20 (which is great), but I continue to gain weight. He was also concerned with my morning fasting sugars. When I go to bed, my sugars are normal, but when I wake up they are slightly high (108ish). I have tested my sugars after meals and they are normal. My a1c is 5.3. He suggested that I start Metformin 500mg, then bump it up to 500mg twice a day. He wanted to see if this would make a difference. Well, I was so so sick for 2 weeks on the 500mg that I stopped taking it. I was willing to deal with a little time of adjustment, but NOT 2 weeks of being very sick. I have literally scoured everything and anything I can to figure out why I am gaining. I know that for some people this shouldn’t be such a big deal, but it is for me. My weight is now sitting at 215 lbs (tears streaming down my face). I got on FB today and watched as my fellow swimmer friends competed in Nationals this past weekend. I have been too embarrassed to compete. I’ve worked so hard to have a body that was in shape and I am utterly depressed, confused, bewildered, and ashamed – even though this is not my fault. Regardless, I know something is wrong. Yesterday, I came here to my entry and reread the posts that everyone posted. How do I say this . . . I haven’t been on here for a while because I was mad that many of you were condemning me for not subscribing to a gluten/dairy/egg/sugar/etc . . diet. Well, I humbly say that I am NOW willing to explore and experiment with the possibility of food sensitivities that might be causing weight gain, joint pain, etc . . . Today I started the Elimination test. I know it is going to be challenging and even scary. My husband is going along for the ride as a support. I am desperate to find out what is going on in my body. This “health failure” ALL started (in my humble opinion) with unexplained weight gain. Then fatigue hit me between the eyes, and then the swollen,stiff pain ridden fingers followed. I just can’t believe that my weight gain is not somehow related to the RA – period! Please pray for me because I have reached the end of my rope. Thanks 🙁

[PhilC]

Hi Jamie,

I don’t have any suggestions for you at this time, but as a long-time member of this forum I can tell you that you’re not the only one here to complain about weight gain. Are you taking a good probiotic every day?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Spiffy1]

It makes me sad, Jamie, that you felt we were condemning you. Oh my goodness! No! I am just very passionate about diet changes as a source of healing so I sometimes get a little excited talking about it. I just know for me I would be in a dark dark place without diet change. For me, I don’t have to wonder if it has helped. As soon as I gave up gluten egg and dairy my rashes stopped, my hair quit falling out, my left arm weakness and loss of dexterity began to dissipate, my muscle and joint pain lessened to a point where I basically have none. I had been on antibiotics for 3 months before my diet change. For me, antibiotics became much more effective and my life began to turn around only after I also incorporated the diet change. But diet is a personal choice. I don’t think anyone here was condemning you. If diet has helped people though they want to be an encouragement to others. That is probably what you picked up on. I am glad you wrote back. I have often wondered how you were doing. Congratulations on you ra factor being 13. I dream of that day! The lowest I have gotten mine is 25 this last September. But it was back up to 37 in February which is what it was last February, too. I have about given up on trying to get rid of my factor. Now I aim just to control it as best I can. Like you, I have no other inflammatory markers. Turns out the RA factor is my one to watch. The first week of giving up gluten and dairy is the hardest. Our bodies are addicted to them because they are inflammatory our bodies respond By releasing serotonin and it relaxes us temporarily but then the inflammation stays. So basically it is like a drug user coming off a high. But once you get past that it is much easier. I don’t crave them anymore. And if I ever do I live in an area where substitutes are plentiful. One thing I did not understand was why your doctor prescribed Metformin. Your A1C was actually really good. And 108 does not a diabetic make. I am just a little confused by that. If you are concerned about blood sugar you should research berberine. I took it for other anti microbial reasons but my blood sugar went from 99 to 82 while I was on it. But I don’t know what other medications you are on so definitely check with a doctor about that. They say it works as well as Metformin without the side effects. Take care and welcome back!

Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWF

[PhilC]

Hi Jamie,

Jamie wrote:

I’ve taken 100mg Minocycline twice a day M/W/F for 9 months now. I have had a few Herxheimer reactions. Overall, my joint pain, stiffness, and swelling has improved. Some days are certainly better than others. I also take 200mg Celebrex twice a day, Estrogen 1/2mg once a day, and Cytomel 25mg once a day.

Talk with your doctor about increasing your dose of mino to twice daily every day. In addition to speeding up your recovery, the higher dose will give you more of minocycline’s anti-inflammatory properties.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Jamie]

Oh my goodness, please do not apologize Spiffy1. You are right, you only shared the passion that you experienced first hand regarding your diet. Sometimes a person is just not prepared to handle so many changes, especially after already making significant changes. I am a certified personal trainer and have always been about eating well balanced meals filled with fresh fruits, veggies, complex carbs, and lots of protein. I’ve been one to frown on clients of mine who were looking for the quick fix cure for obesity because those are never lasting. I also always advocated for an occasional treat When I weighed well over 260 lbs, I ate entire cartons of HaagenDaaz Rum Raisen Ice cream – my favorite. I just didn’t care. As I began exercising and learning to eat right, I learned that it wasn’t that I COULDN’T have those things, I just needed to learn portion control and moderation. When the sports med doc told me that he wanted me to see a rheumatologist because the only test result that was abnormal was R Factor, I thought it must be wrong. The only symptoms I was exhibiting at the time was weight gain and paralyzing fatigue. At that time he suggested that I look into the gluten-free diet and I refused. I feel like I’ve come full circle now 🙁 I don’t know what this elimination diet will detect, but I am now open to whatever. There are certain things in my dietary arsenal that I would be devastated to have to stop eating and other’s, not so much. The truth is, whenever you tell someone they can’t have or do something, that’s the very thing they want to do! This coming Monday will be 1 week on the Elimination “diet”. It’s been challenging, but not as hard as I thought because I already ate pretty healthy. Right now, hubby and I have eliminated gluten / sugar / dairy / eggs / soy. I’ve learned so much about food and the things that are added to food just in the last week. We’ve also tried things that we both have never had . . . and even liked it. So, I guess we will see where things lead us. As far as the Metformin, he thought that adding a low dose of Metformin would help with the slightly elevated fasting sugars in the morning plus it is supposed to have a weight loss benefit for some. Well, it’s not happening for me because it made my intestines just ache. PhilC, the doctor originally recommended the Harvard Protocol but really left it up to me. He always prescribes 60 Minocyclines per month regardless. Maybe I should try to increase how often I am taking it. Friends, I’m just struggling and wanting answers. It seems like I came so far, and then all of a sudden something happened. If you are interested in understanding my sadness, I still have my weight loss story and personal training page operating. I wanted my husband to remove it because I feel like a failure and would be embarrassed to train anyone, but he believes that some day we will get to the bottom of this. Thank-you so much for caring. I’m sorry it took me some time to reply. I coach a USA swim team and things have been crazy hectic with the beginning of the summer season. Thanks again.

[Jamie]

http://www.dreamtolose.com

[Maz]

Hi Jaime,

I haven’t read through the other replies yet, but saw you’re taking estrogen. Made me wonder if unopposed estrogen (imbalance with progesterone) is causing water weight gain. I’m not sure of your age or thyroid status (you’re also taking cytomel) but do you have a recent full thyroid hormone panel you can share (including Free T3 and Free T4 with Reverse T3)? Also, is the estrogen bio-identical and for what purpose was it given?

Also, have you had a chance to read The New Arthritis Breakthrough yet? Dr. Brown comments that either weight gain or loss is experienced by RAers. I have a lot of experience with this, as I also gained weight, not realizing that my thyroid was struggling (kept being told my thyroid was in WNR) but that I had a toxic, multinodular goiter. Inflammation can definitely lead to weight gain, because it blocks T4 to T3 conversion and you sound very well versed in all this. However, if ferritin, vitamin D, B12 are low, and adrenals are off (cortisol) the body just won’t use convert effectively to the active hormone and sub-clinical hypothyroidism is a real thing. E.g., chronic stress leads to imbalanced cortisol, which affects blood sugars, feeds Candida in the gut, leads to leaky gut and food sensitivities, which feed the inflammatory cycle. It’s interesting that diabetics who use systemic anti-fungals have mentioned that they experience lower blood sugars, and have had to carefully monitor and lower their insulin.

You might also find this article of interest in the bigger scheme of things…e.g., how rheumatic pain meds lead to leaky gut and food sensitivities:

Gluten, Inflammation and Leaky Gut in Rheumatic Diseases

It’s just a hunch, Jaime, but have you researched how unopposed estrogen therapy thwarts thyroid function (and promotes Candida)?

My youngest was a competitive swimmer at college…yikes, the season sure does get stressful and busy, even in division 2/3.

[PhilC]

Hi Jamie,

Jamie wrote:

I also take 200mg Celebrex twice a day, Estrogen 1/2mg once a day, and Cytomel 25mg once a day.

How long have you been taking Celebrex?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Jamie]

I’m so sorry that it takes me a while to check back in with you all. Summer is always a crazy time of year. My husband and I not only coach a USA swim team, but we also coach a summer rec team and are the St. Louis city contracted providers for the free city swim camp program. It’s important that I take some time for me – no electronics. Thanks for understanding. I have been working closely with my family practice doc. He is a kind man that listens to my concerns and values my input. When I first approached him about the antibiotic protocol, he listened to everything I said, wrote it all down, and told me to give him a little time to investigate things. A week later he contacted me and believed that it was interesting and worthwhile. Both of us are learning together, which is cool. After being on the Minocin for 6 months, he wanted to test my R Factor as well as other inflammation markers. He was giddy and amazed when my R Factor returned back lower. The inflammation markers on the other tests have never been high. Lately, I have been having some substantial joint pain. I told him that I know that many doctors have success in running some blood work to rule out other bacteria that might also contribute to joint pain and swelling. He was all ears. After much investigation, I have quit taking Minocin for 4 weeks in order to have tests for mycoplasma,strep, and gc/chlamidia. This is to avoid getting a false result on these tests. The gc/chlamydia test freaks me out because my hubby and I have been happily together for 32 years and I can’t imagine it coming back positive. Anyway, I suspended taking the Minocin on June 1, and by yesterday I am in complete pain. This is going to be a long month. As far as estrogen, I had a hysterectomy (ovaries left in) about 15 years ago. When I was about 45, I began taking a low dose estrogen 1/2mg. It did not appear to effect my weight. I even began using progesterone cream some years later, after I started gaining weight concerned that maybe the estrogen was causing the weight gain. As far as thyroid issues – that was another issue that I began investigating. Before I met the doctor I am with now, I did some research and learned that Reverse T3 can happen due to inflammation which would cause weight gain. Rheumatoid arthritis = inflammation! So, I paid on my own a T3, T4, and Reverse T3 tests to see if my Reverse T3 was high – or the ratio was low. BINGO! My ratio was a 9 when optimally it should be over 20. My current doctor agreed that taking some Cytomel might help. It has helped with my Reverse T3 as my ratio is now 23, but there is no change with my weight. During my appointment with him last Friday, he looked straight at me and said that he was unsure why I was struggling to lose weight (I respected that), but that he was going to aggressively work with me to find the answer. He believes that the steady and gradual weight gain seems to definitely coincide with the RA diagnoses. I have been re-reading The Arthritis Breakthrough again. Just looking for more nuggets that will help me.

[Author]

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