Gluten Free Diet

[Cherie]

Hi everyone,

I've been on this gluten free diet for two months now,:doh: I got to say I feel worse now than I did when I was eating wheat. I'm in more pain and more swollen. Is this normal am I suppose to feel worse before I get better. Did anyone else go through the same thing. Could it be I haven't been on it long enough yet. Any feed back would be appreciated.

Thanks, Heather

[Maz]

[user=2022]Cherie[/user] wrote:

I've been on this gluten free diet for two months now,:doh: I got to say I feel worse now than I did when I was eating wheat. I'm in more pain and more swollen. Is this normal am I suppose to feel worse before I get better. Did anyone else go through the same thing. Could it be I haven't been on it long enough yet. Any feed back would be appreciated.

Hi Heather,

If we haven't had a chance to chat before, just want to welcome you to the forum as it looks like you registered very recently. I was born in Canada and lived in Ontario as a youngster, so we're fellow countrywomen. 🙂 All my family still live in various parts of Ontario…Ottawa, Pickering, Guelph and Toronto. Anyway, just wanted to say that it's nice to meet you!

Am I reading your sig line right that you started AP last March? If so, it might be time to go back to the drawing board and reassess your protocol, if you are not seeing any improvements and only getting worse. Here is a link on the main site that offers some suggestions for things to look at:

https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/89.html

My MIL has psoriatic arthritis and anklylosing spondylitis and she is very sensitive to the nightshades (potatoes, tomatoes, peppers) and starches. If she goes anywhere near a potato, for instance, her fingers turn into sausages within hours. Have you also found that to be the case? Have you had any food sensitivty testing done, at all? If not, just wonder if taking measures to reduce these other possible food offenders may help in addition to the gluten-free diet.

It may also be time to consider some type of combination oral therapy. Are you working with an open or experienced physician that you could talk to about this? In the Spring edition of the RBF eBulletin, a study (below) was included linking various spondylarthropies, including psoriatic arthritis, to chlamydia trachomatis and chlamydia pneumoniae. These aren't the only possible pathogens, of course, but may be worth investigating:

https://www.roadback.org/EmailBlasts/ebulletin_spring09.html

Chlamydia May Play Role in Etiopathogenesis of Spondylarthritides

On May 6th, 2009, Science Daily reported on research conducted at the University of South Florida, which demonstrated that ankylosing spondylitis (AS), psoriatic arthritis, inflammatory bowel-disease-related arthritis, reactive arthritis (ReA) and undifferentiated spondylarthritides (uSpA), all sharing similar clinical features, may have a significant relationship to the infections Chlamydia trachomatis or Chlamydia pneumoniae. Both of these infections have been documented as causing reactive arthritis and are thought to be commonly under-recognized. The article states, ?It is believed that as many as 150,000 cases of Chlamydia trachomatis-induced ReA may appear in the U.S. each year compared to about 125,000 new cases of rheumatoid arthritis. This is a low estimate since it does not include cases resulting from Chlamydia pneumoniae.? The article emphasizes the considerable burden placed upon health care systems in the U.S. and abroad by these forms of arthritis. RBF remains committed to bringing the good news of AP, as a safe, effective alternative to those suffering from all forms of reactive arthritis caused by such infections.

Source:
http://www.sciencedaily.com/releases/2009/04/090430161234.htm

The following website has information on antibiotic combination protocols for chlamydial infections:

http://www.cpnhelp.org/treatment_protocols

Hope something here might help?

Peace, Maz

[frhorngal]

Hi Heather,

I found going gluten free to be tremendously helpful, but not for my RA. My gut distress and migraines are gone but I noticed very little improvement with my joint swelling and pain. I am, however, extremely sensitive to nearly all grains. (Rice and corn especially throw me into excruciating pain within hours.) I am exploring soaking them per Sally Fallon's guidelines to see if that makes them more digestible.

Food allergy testing lead me nowhere, even with many different supposedly 'sensitive' tests for IgG, IgM, IgE, etc. I had no real answers from them to guide me…just my own experiences with fasting/elimination diets.

I find that rotating foods helps..I can have an apple or 2 a week, but every day causes pain…same with broccoli/cabbage/turnips, etc.

One thing is for certain, you will learn a LOT about how your body responds to every trigger…whether environmental, food, stress, medicine by doing this.

RA/Lyme: 100mg Minocin (brand) MWF, 3mg LDN, 10mg CBD- BID

[Trudi]

[user=2022]Cherie[/user] wrote:

I've been on this gluten free diet for two months now,:doh: I got to say I feel worse now than I did when I was eating wheat. I'm in more pain and more swollen. Is this normal am I suppose to feel worse before I get better. Did anyone else go through the same thing. Could it be I haven't been on it long enough yet. Any feed back would be appreciated.

I was on an anti-inflammatory diet for two months–which included no gluten, dairy, beef, pork, & eggs.  I stopped after the two months because I was absolutely miserable.  When I saw my LLMD he said I should have had marked improvement by 2 weeks.  His nurse wholeheartedly agreed because she responded so well to this diet. 

What I did find out from this (I had a computerized electro-dermal food screening after the diet), is that I am sensitive to dairy and tree nuts.  Oddly enough, I can have butter and cheddar cheese.  Going back to my regular diet made a world of difference.  My  problem is that my abx treatment causes me a lot of grief with herxing and it's just something I have to fine-tune to make life more tolerable.

Take care,

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[PhilC]

[user=2022]Cherie[/user] wrote:

I've been on this gluten free diet for two months now,:doh: I got to say I feel worse now than I did when I was eating wheat. I'm in more pain and more swollen.

Hi Heather,

Based on your experience, I have a suspicion that you are sensitive to some of the foods you have been eating instead of the wheat. What have you been eating more of lately?

Phil

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

[Cherie]

Hi Maz,

Nice to meet you too. To answer some of your questions, when I first started minocin I was on 50mg. everyday and after two weeks switched to 100mg everyday at the same time I started a gluten free diet, when I returned to my Rheumy he was impressed that I was doing so well that he switched me to 200mg. that' when I went into a big herx and went down hill. So I did a one week wash out and returned to 100mg.3x a day, but I have'nt been able to get back to where I was when I started. Just before I started the 200mg. I stopped the gluten free diet so that I could be tested for celiac, but it came back negative. But because so much of the immune system is in the gut I thought I would restart it again, to see what would happen.

No Maz I've never had a food sensitivity test done, but the last time I saw my Rheumy I asked for one and he said I already had the celiac one done so what's the point. I'm the only patient he has on ap. so I'm like his guinea pig. I did'nt know about Chlamydia, I'll check it out.

Thanks, Maz

[Cherie]

Hi Frhorngal,

I don't know what foods I'm sensitive too, but maybe I should do what your doing eliminate foods and see what happens. Soon there won't be anything left to eat. I have to say since I've been on the gluten free diet, my sinuses have cleared up. It's strange I never ever complained about stomach problems and than I get this disease.

Thanks for your reply,

Heather

[Cherie]

Hi Trudi,

Thanks for your reply, it's just never ends does it.

Thanks, Heather

[Cherie]

Hi Philc,

Potatoes, spaghetti sauce , rice, corn, vegatables, fruit and anything without wheat.

[lynnie_sydney]

Cherie – this site was set up by one of the most experienced AP docs, Dr K in Lufkin, Texas. You dont have to be celiac to have an intolerance/sensitivity to gluten. Some good info in here: Lynnie

http://www.easttexasgig.org/

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[PhilC]

[user=2022]Cherie[/user] wrote:

Hi Philc,

Potatoes, spaghetti sauce , rice, corn, vegatables, fruit and anything without wheat.

Hi Heather,

Based on your experience and that list of foods, there is a high probability that you are sensitive one or more of the nightshade vegetables: eggplant, potatoes, tomatoes, and peppers of all kinds (e.g., cayenne, chili peppers, paprika, pimento, green peppers, bell peppers, sweet peppers, etc.). Personally, I believe that everyone who has an “autoimmune” or inflammatory disease should eliminate nightshade vegetables from their diet because the potential benefit is so great. Later, when they're feeling really well they can always try adding them back one at a time to see what happens.

By the way, sweet potatoes should be fine. They are not a nightshade, and are not closely related to potatoes.

I should add that an elimination diet is preferable since there are other possible culprits besides the nightshade vegetables, and not everyone is sensitive to the same foods. I'd like to talk about that some more, but it is quite late right now and I need to go to bed. 😀

Phil

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

[Kim]

People trying elimination diets should know that some foods will have a delayed reaction, so that if you eat something on Monday, but don't react until Wednesday, it's hard to know which food for certain it is.

kim

[Cherie]

Thanks, Lynnie

[Cherie]

Thanks everyone

[seas]

Hi Cherie,

I came from Ontario before moving out West – nice to see some more Canuks on the site.  I am new here too, welcome!

 Re: gluten free diet – I started a gluten free lifestyle about 4 months ago and was amazed at how many products actually have gluten in them. Initially I just thought breads etc, boy was I wrong.  Gluten is in everything and more than likely not on the label –

Something that has greatly helped my digestive system and “symptoms” (and you may well already know this) is by using very good digestive enzymes before I eat., full spectrum enzymes that contain 'Protease, Amylase, Lipase, Cellulase, Hemicelluase and Lactase.  This too required quite a lot of research in understanding that all products are not the same.  Also much of this depends on what you eat and how often as you have indicated in your post. I did an elimination diet for about 8 weeks which allowed me to really gage the effects of reintroducing certain foods back into my diet. My sensitivities were way beyond what I had imagined.

I am an organic crazy person and have probably spent far too much $$ over the years on it, but still am adamant that each and every little thing can make a difference. That being said (sorry I'm being long winded here) a couple of months ago I noticed I was having a hypersensitive reaction to my organic skim milk so after doing the elimination diet for 2 months I tried it again in a cup of tea – wow – that was a mistake. So needless to say you are on the right track of trying to sus out what you as an individual can and cannot tolerate. It really all does make a difference in fine tuning things.  Also again you probably know this – a good probiotic is totally necessary and not only helps to abate any yeast problems but seems to be a good partner with the enzymes.  Yogurt is ok, but personally as I do not do dairy anymore I think it is lacking in the live probiotics necessary.

OK I'm done….. now I've almost forgotten why I was responding in the first place LOL :doh: Hopefully some of this helps

Cheers, Seas

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