My Immune System Is Revolting On Me!

[RNRN]

Hello. 

 

I am hoping to find (if nothing else!) some peace of mind here. I am a 33yo female with a history of hypothyroidism (x 10 years now.)

Ever since my thyroid went bad, I've had some weird on and off chronic symptoms (mostly joint and muscle pain, indigestion and thinning hair) that have not been able to be explained, but also have only slightly improved since going on thyroid medication. Luckily, I have a great PCP and I am a nurse myself so I am confident Im on the right thyroid medication and its working for me. However over the past year, some other lovely symptoms have developed.

The most irritating symptom is skin rashes- a mix between excema and possibly some dermatitis herpetaformis. Problem is, the dermatitis lesions are usually in my scalp, and of course NEVER around when I go see my doc or the derm, so I am self diagnosing. But although the break outs are infrequent, Im pretty sure they are DH and nothing else! The excema is constant, it never goes away now. The muscle pain, which had improved some a few years ago, is now back, and I have random swelling of my lymph nodes in my neck. The worst symptom which had recently developed was horrible diarrhea- ONLY at night (middle of the night, usually) with horrible stomach pain. The diarrhea was watery, sometimes oily, and only at night. After lots of trial and error (and googling!) I thought hey- Maybe this is a gluten issue.

So I went to my doctor. My TTG/EMA were negative, however my IgA was low. Not horribly low- just about 10 points below normal. So my smart doctor reccomended a scope (colonoscopy or endo- not sure.) So  I went to a GI guy. He was - well not great. I had randomly had a cat scan of my abdomen maybe 3 months before my visit, so he said, if my cat scan is negative, chances are nothing is wrong with my gut. Im probably just horribly constipated and thats why I get diarrhea at night!!?? He put me on massive amounts of fiber (um, hello, ask me about my diet- I eat tons of greens and fruit daily!) and then wanted me to do a big clean out (A FIVE DAY PREP) for a colonocopy. It never happened, because the meds he gave me for the prep had fake sweetners in them- I have been allergic to nutra sweet for as long as I can remember. (I told him that, too.) 

So, the scope was never done, and I've never gone back to that GI. I tried an elimination diet and was pretty sure it was the darn gluten. (sniff, tear, no more pasta for this italian girl.) I've been gluten free for about 4 months now. NO diarrhea at all. No belly pain at all. Joint pain is better. Havent had a DH lesion in awhile, though my excema is the same. 

So I am due to return to my primary doc this monday and I want to get tested again. However ,Im gluten free now, and the thought of eating gluten for WEEKS or MONTHS sounds so painful to me! I know- if you know your intolerant, why get tested? Just eat gluten free! Well, as a nurse I know that the immune response that comes with Celiac disease can be very dangerous. So,  I would like to know how careful I need to be. I rarely go out to eat ,but when I do, I have not been asking about sauces/dressings. (I dont eat pasta or bread or breaded stuff, of course.) So - do I need to be that careful? Also, this May, I am getting married! We have talked about starting a family soon. For pregnancy- is it dangerous to not know your diagnosis? Can it make morning sickness/nausea/constipation while pregnant worse? Because Im concerned about all of that- I have family members with a history of hyperemsis- or not keeping anything down while pregnant. Would genetic testing be enough (so I can stay on my diet) and if so, how can I get that done? 

Of course, Im going to ask my doctor all these questions- but I thought I'd find some help (or peace of mind) in the experience others have had. I am new to this site, but it seems as though there is a wealth of information.
Thanks everyone, and havea  great weekend. 
RNRN

 

 

[cyclinglady]

First of all, if you have celiac disease you can't cheat -- EVER!  Not even a little bit.    If you want a celiac disease diagnosis, you need to have a complete celiac panel run.  Any doctor can order it but you have to be eating gluten for many weeks.     A genetic test will only determine if you have the CHANCE of developing celiac disease.  It's typically only ordered when you have inconclusive diagnostic tests as it helps doctors rule out celiac disease.  

 

celiac disease patients can have fertility problems, so that's another reason to get checked and may be worth going back on gluten to get it.  

 

Check out the University of Chicago's Celiac Disease website for more information.  

 

Good luck! 

[LauraTX]

Thanks for sharing with us.  Like cyclinglady said, no cheating if you are actually a celiac  If I were you, I would try to hunt down another GI doctor and get in to see them.  They can do the genetic testing and depending on those results you can personally weigh the benefit of eating gluten temporarily to be tested for celiac.  It will really come down to how important having the answer is to you. For me, especially if I were wanting to have children, knowing my full medical state and any possible risk that my offspring could have it so it can be identified early, would be important.  

 

I have common variable immunodeficiency with a very low IgA and IgG, I am on IVIG for it, will be forever.  If you still feel that everything is inconclusive, you maybe could go talk to an immunologist since you had the slightly low IgA.  The guy I go to does allergy,asthma, and immunology, but he also treats and diagnoses celiac disease sometimes, partners with a GI clinic, and he has a lot of patients in a celiac study.  His specialization seems to cross many lines, so maybe if you get a doctor like that, they can at least get you steered in the right direction.  

 

Your symptoms sound a lot like what I have gone through, if you have a good relationship with your PCP, going to them and saying "test me for everything" and having them run a lot of blood tests like ANA, uric acid, CRP, etc may also be a good step to help rule some things out, like autoimmune conditions.  I wish you the best of luck!

[nvsmom]

Welcome to the board.  

 

I think, if I was you, I would ask for some celiac testing even though you are mostly gluten-free / gluten-lite. You may still have elevated enough antibody levels to show up in your blood test results. Levels can remain elevated for a few weeks to over a year after going gluten-free (in some tests) so it could be helpful.

 

I'm surprised your doctor didn't run the Immunoglobulin G versions of the celiac tests when your serum IgA came back low. That's part of the reason that they are used, that and some people only test positive in the IgG versions. Anyway, ask for the tTG IgG, DGP IgG, and EMA IgA, and you might want to request your tTG IgA and EMA IgA test results. I have seen a few IgA deficient people around here with high normal or barely elevated tTG IgA tests... Was yours a definite negative?  

 

The fact that your IgA is low should set off warning bells too. IgA deficiency is found in 5% of all celiacs which is higher than the regular population.

 

As the others said, you do need to be THAT careful with your diet. A crumb of gluten/bread stuck on your gluten-free dinner could be enough to set off an autoimmune response that can last weeks... We have to be pretty anal about eating out.  LOL

 

As for the pg, I was undiagnosed when I had my three boys and I do honestly wonder if my nausea and fatigue was made worse by my untreated celiac disease (and hypothyroidism). I was quite ill (despite taking diclectin) for many months with each pregnancy, and lost 10-20 lbs in the first 4-5 months. It could be a coincidence though, I have done no research into it to learn more - our family is complete.

 

Good luck. Tell us what you decide to do.  

[RNRN]

It has been awhile since I have responded- and I wanted to say that I did get a chance to read your posts before I went to my 

doctor and they were very helpful- Thank you so much!

Unfortunatly, despite ALL of the information, and my wonderful PCP, Im still in a state of confusion. Sigh. I see that many people

get this way before/during diagnosis, and I cant imagine not having the medical knowledge that I do and trying to navigate the system.

So, My doctor did re-test me. This time, he did do more blood work- TTG, Reticulin IgA, Endosomal IgA, and Gliadin IgA and IgG. 

I have, however, been gluten free for some time. (I ate a little gluten the day before, then read that you probably have to eat gluten

for weeks before, and gave up. I didnt really have any symptoms, so I did not expect a result.) 
Interstingly enough- this time my tests were a definitive Negative and NOT inconclusive. So- Im thinking- Maybe I am gluten

intolerant and because of my low IgA, "inconclusive" is as positive as my bloodwork will get? Just a thought. My doctor

agrees that its possible that I was gluten intolerant while pregnant and exacerbated it by eating crackers for nausea... so that 

he said we'll just have to wait and see. I discussed with him going to another GI, but he agreed that eating gluten for a month was not a great idea.

My doctor reccomended another test- Elisa/ACT Lymphocyte reactivity test. The test is a blood draw (although complicated-

you cant take antihistamines, or certain other medications, for 4 days prior, and the day prior, you can not use ANY lotions/conditioners

or other beauty products. It makes sense: He thinks if my immune system is busy fighting something else (Like gluten, or another

food or chemical addititive that I am intolerant to,) Then its not going to work properly when asked to do other tasts (Like

the inconclusive TB test I had, the inconclusive Celiac test, or my frequent although short upper respiratory infections.) 
Has anyone else heard of this kind of testing? I forget the name of the company- I have it at home. Im debating doing it, 

but it is a bit costly and insurance of course does not cover it. 

Alll of my other bloodwork- Antinuclear antibodies, Cardio-CRP, Non-Cardiac CRP, was really good this time around. (Including my triglycerides, 

which have been high my whole life because I have genetic high cholesterol. Very exciting to be in normal range!) 

My doctor and I did go back and review my IgA levels over the years, 50s, 60s, 70s, so apparently I have been low for a very long time. 

 

The only tests I had this time around that were abnormal were a HIGH B12 level and a HIGH iron level?! Bizzarre, huh? I Know Celiac causes 

malabsorption issues, but usually low levels, not high? OR can you absorb too much? My vitamin D levels are still low, and I take 2500u/Day! 
I freaked out about this high iron/B12 at first- usually only seen in advanced liver disease or leukemia- but my liver numbers are fine

and my White blood cells are fine. I stopped taking vitamins, and I will go back for recheck of levels in a month. 

 

I do like the idea of seeing an Immunologist for that reason- and Im hoping I can find one that is used to taking care of people with Celiac, 

as LauraTX mentioned. So, Im looking into that as well. 

In the meantime, with the absence of gluten, I do not have ANY stomach issues or diarrhea! I still have some joint pain, which feels like nerve pain,

burning/aching down my arms. Its better than it was when i ate gluten, but its not totally gone. My lymph nodes still swell now and again too. 

 

One day I will figure myself out!! Thank you all, again, for your words of wisdom and support. I am going to re-examine my diet and make

sure no gluten is hidden anywhere. Thank goodness there isnt any in my thyroid pills- but I have to look at other vitamins and sauces and such. 

Rachel 

 

 

 

[1desperateladysaved]

I had 30 years of undiagnosed celiac.  I had nutritional deficiencies.  I had 5 pregnancies all with extreme nausea.  My current Functional Medicine Nurse told me she believes that my magnesium deficiency caused the nausea in my pregnancies.  1 of my pregnancies (the first) ended with an early miscarriage.  All 5  of my other pregnancies ended with the healthy birth of a child.  .  I have had subsequent infertility.  I am so glad that you know about your problem with gluten now and can begin to plan.

 

I would suggest checking all nutrient levels that can be deficient when you have celiac disease.  I can think of some for you:  Magnesium, total iron, vitamin B and vitamin D.  You may want to check your orthostatic blood pressure to see if your adrenal glands have suffered stress.

 

I have survived 30 years of celiac symptoms and have been able to pull my nutrient levels up.  The villi damage is reversible.  Stick to the diet 100 %.

 

D

[kareng]

If you weren't eating gluten, they won't test positive, even if he did the correct test for a person low on IGA - TTG IGA.

[frieze]

elevated B12 is RARELY of concern.  elevated iron? hemochromatosis?  have you been checked for the gene that prevents proper methylation of B vits? that may cause an elevated test....good luck

[RNRN]

elevated B12 is RARELY of concern.  elevated iron? hemochromatosis?  have you been checked for the gene that prevents proper methylation of B vits? that may cause an elevated test....good luck

I did have high Iron- ever so slightly, but high. I do eat a lot of red meat (going to cut down now) but b12 is water soluble and should NEVER be high? 

I thought hemachromatosis too, but my Folate and TIBC were normal. Heading back to the docs again in a few weeks... sigh. 

[frieze]

I did have high Iron- ever so slightly, but high. I do eat a lot of red meat (going to cut down now) but b12 is water soluble and should NEVER be high? 

I thought hemachromatosis too, but my Folate and TIBC were normal. Heading back to the docs again in a few weeks... sigh. 

if you don't have the gene for methylation, your blood level could be high with analogues.

but if you folate is ok, that shouldn't be the issue....