Is it gluten or mycoplasma or both?

[orchid]

I just wanted to give an update. I recently had an appt with a new doctor – he was highly recommended to me by friends and strangers alike. I had to wait four months to meet with him, but it was very much worth it. He was nice, very informed, and much to my delight, stated the importance of patients being pro-active about their own health.

I explained my health history and current symptoms and he looked over my labs, etc. He really took his time with me and we talked for over an hour.

He looked over my female hormone panel and said my hormones (especially estrogen levels) are very low but not menopausal (I'm 31). He looked over my thyroid panels and thinks I should be on a different medication. Then – told me there's a very good chance, that I'm gluten intolerant, which is possibly the root cause of most of my issues – even my joint pain. He said you don't have to be “celiac” to be gluten intolerant as it can affect many functions of the body – brain/joints, etc.

I described my family and their symptoms as well (since we have a lot of autoimmune issues) and he suggested they, too, get tested. He said he could also be totally wrong — but everything we discussed so far, pointed to gluten. I liked that he didn't have an ego…just wants be to feel better.

I told him I already tried going gluten-free on my own for about a year, but it's been off/on and I haven't been really strict about it. But, even with a piece of bread, etc here or there, my joint pain had greatly decreased by cutting out most gluten. So, I've gone completely GF (strict) for a week now and I'm curious to see what happens.

I notice my joint pain is also worse just before/during my period, so I'm sure he right about the female hormones (especially estrogen) being low. He asked me how my anxiety levels are. I almost fell over — that, along with the joint pain, is the number one symptom that has bothered me yet doctors never focus on it. Woo hoo! Finally a doctor who is going to LISTEN. Based on my labs, he couldn't believe I'm even functioning. He said – you must be feeling awful.

So, I am awaiting test results, plan on switching to armour thyroid and have been gluten free (more strict) for about 2 months now. I had been struggling with losing weight – normally I'm really thin but the death of my father, major stress and up/down thyroid really messed with me. And, I'm the type that eats LESS under stress, not more. So, it didn't make sense.

Well, I went from 130 to 123lbs in 2 months – it just fell off me! May not seem like a big deal but I'm small framed and only 5'4 so it makes a big difference in how I feel and clothes fit. I have been gluten-free (very strict) for 1 week now.

My husband is going GF with me and we've cleared it out of the house and have been checking labels for hidden sources, etc. I am really excited about the prospect of healing myself (through food). We are now gluten-free AND vegetarian which seems daunting at first, but I don't care…I'm willing to do whatever it takes and have been doing pretty well so far.

So, my question…I don't test positive for anything but thyroid antibodies and now positive ANA. Could I cure my symptoms with diet alone or is mycoplasma always involved with these things? I know the stress of the past 2 years has done a number on my immune system. This is something I'll be discussing with my doctor on the next appt.

I'm feeling better already and it's much easier than I thought. Just wanted to share and I'll post back when I get my results and get my hormones, etc back in working order.

Thanks for listening and if there is any insight or advice you can offer, I'd appreciate it!
😀

[Lynne G.SD]

Hi Orchid;
     I am so glad you finally found a doctor as good as mine.WOO HOO! That will make all the difference.Re your question…gluten,micos or both…. the answer is both.Micoplasma are everywhere and with the damage the gluten has done to your gut,it has left the door wide open for them to infiltrate your system.I did not progress on AP until the damage from the gluten was reversed and that took over a year.I also had to knock down my D1,25 that was 3 times too high which also took time.After that it only took me 18 months for total remission.
    Good luck my darling,you are in good hands now and very lucky to have a husband that will go gluten free with you.I bet you might even see that he has more energy a grains really are not good for anyone since they started fooling around with their genetics a few decades ago.Grains are not at all the same as they were 50 years ago ,their yield was too low and could not supply enough for a growing population.Now if you can come up with a really good turkey stuffing……..
                       Lynne

[JBJBJB]

Great story. Is that doc in WI or IA or in Chicago? He sounds like Dr. S in Iowa. I am on Armour now. The supply is pretty tight. Before my period, I also have a lot of pain and swelling in my muscles and joints.

Good luck on your diet.  JB

[Maz]

[user=515]orchid[/user] wrote:

So, my question…I don't test positive for anything but thyroid antibodies and now positive ANA. Could I cure my symptoms with diet alone or is mycoplasma always involved with these things?

 

Hi Orchid,

The funny thing about ANA is that it can be positive and mean nothing in the absence of symptoms, but with joint pain and supportive bloodwork to indicate a particular rheumatic disease I, personally, wouldn't delay going on AP. I feel as Lynne does that it could very well be both….gluten intolerance and chronic infections (not necessarily just mycoplasma) as the two aren't necessarily mutually exclusive. Lots of rheumatics find they are gluten intolerant as so much of the immune system is in the gut…so it's kind of like a house of cards with one thing exacerbating the other. A good majority of the world's population walks around with mycoplasma and it never bothers them. With rheumatics, though, we become sensitized to foreign invaders, whether bacterial, fungal, viral or even food that leaks through the gut and is picked up as foreign, too.

Great job finding a doc who is treating you holistically like this. Will he help you with AP, too, do you think?

Peace, Maz 

[Maz]

JB, just wondering…did you get your IGeneX labs back yet? I seem to remember you said you sent them off in mid-Oct some time?  

Do hope you're feeling okay off your AP and managing to keep up with your hefty work schedule. Seems like ages since your last post…you've been missed! 🙂

Peace, Maz

[m.]

>He looked over my female hormone panel and said my hormones (especially estrogen levels) are very low but not menopausal (I'm 31).

Did he run a blood test on you to check female sex hormone levels? If so, this is completely inaccurate. See John Lee's books or web site.

Saliva testing will give you a number that means something. It will measure what is bioavailable, in the tissues, not what is bound up and floating around in the bloodstream. It's apples and oranges, even if it may sound like the same thing.

If you are still cycling (having periods), you are not too low in estrogen. On the contrary, it is much more common for women to be estrogen dominant. That is, too little progesterone in relation to estrogen. Estrogen dominance is dangerous (cancer). Having adequate (not too much, not too little) progesterone will help your joint pain.

When he tested your thyroid, did you take your thyroid meds the day of the test? Did you take it fasting or non fasting? What were your scores for TSH, FT3 and FT4?

I've read of many people having trouble with the new Armour formulation. See Mary Shomon. Lots have switched to Nature-Throid.

HTH

[JBJBJB]

Maz,

Ha ha ha…… I did not know Igenex sent the results to the doc's office. I checked on my mailbox every day, anxiously waiting for 5 weeks….. finally I emailed them. The lady said I should call mydoc's office. I did. But they did not receive it. I called the Igenex back. They said they would send it again. But today I called my doc's office. They said they have not got it……

Who knows….

Thanks for asking, Maz.

Happy thanksgiving to you!

JB

 

 

[orchid]

Thanks for all of your replies!

Lynne – My D levels are actually a little low – weird how yours were high. And, I have found a really good gluten free recipe for stuffing. Yum! You give me lots of hope considering you are in remission!

JB – it's actually a doctor near me in IL. He wants to switch me to armour but was aware the supplies are tight, so we'll figure out our plan of action on my next appt.

Maz – thanks for all the info. I am still planning to see Dr F in January, so I'll get all my ducks in a row and be ready, set, go! I will definitely ask this new doc if he is familiar with AP and if not, will he consider it.

M – I haven't received my new labs back yet. He was only going off of the female sex panel my last doctor had run (a 24 hr urine panel). I'm already on bioidentical progesterone (my last doctor). He is hoping that regulating my thyroid and cutting out the gluten will help my female hormones levels, and will run a test in a few months. Not sure if he usually runs saliva or a blood test.

I've always had thyroid testing (non-fasting) and usually ran the FT4, FT3 and TSH and TPO. I have hashimotos.

This new doctor wanted to run a whole thyroid panel (7 different thyroid tests), in particular, reverse T3. He is aware armour is in low supply, he knew about the formulation change and he was really upset about it. Apparently – they are working on returning to the old formula, but it is slow going. When my new labs come back, we'll discuss it again, figure out what medication is even available and he said he'll work with me on the switch, so that it goes smoothly.

Thanks again!

[Lynne G.SD]

Hi Orchid;
     You just might have something there with the thyroid.I was put through a load of tests but they all came back o.k.
    By the way,which D were you tested for,there is a buch of them.My D3 was low but D1,25 was wayyyyyy too high

[JBJBJB]

[user=732]m.[/user] wrote:

Did he run a blood test on you to check female sex hormone levels? If so, this is completely inaccurate. See John Lee's books or web site.

Saliva testing will give you a number that means something. It will measure what is bioavailable, in the tissues, not what is bound up and floating around in the bloodstream. It's apples and oranges, even if it may sound like the same thing.

should I not take armour on the day I test TSH? or should I? I have a very messy heart beat recently. could this be too much armour?

[orchid]

Hi JB,

I'm not sure — I was always told it didn't matter if you took your thyroid meds the day of the blood tests, BUT this new doctor gave me specific instructions to NOT take my synthroid before the test and wanted me to go in the morning.

Not sure how it works with armour. Maybe m knows.

So – maybe it does matter? I'll ask him why next appt…

[m.]

I have always been told to take my thyroid meds in the morning, upon waking, per usual. Then, to have the blood drawn, non-fasting, mid-morning or after lunch in the afternoon.

The reasoning as I understand it is to see how you're doing on your particular dose. If you don't take your meds, your scores will look worse. Same with taking the test fasting.

But, some patients want that—it's a tactic to convince their MDs they still need thyroid meds, or need more.

JME with Armour or Nature-Throid

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