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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Are These Common Celiac Symptoms?
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Hello everyone. I've been having many different symptoms and I just wanted to see what some people's thoughts were on this. I've been having seemingly random bouts of diarrhea, terrible gas, heartburn, and abdominal discomfort recently. When I say recently, I mean that in the past month at least one or two of these symptoms is happening every day in some way and it's sometimes mild and sometimes severe, but in the past year, I have been struggling with these symptoms on an intermittent basis.The gas is what is usually there constantly along with stomach rumbling, but I also have gotten heartburn several times in the past few weeks, and it's usually accompanied by the gas and when I have heartburn, it's painful to the point of not being able to concentrate. Last time I had this heartburn and gas, I remember that I was eating a few bagels in a hurry a few hours beforehand.

 

However, today I feel mostly fine except for some minor stomach pain I got a few hours after eating and weakness when I tried exercising. I had pasta with vegetables for lunch. Some days, though, I will have a bad headache and feel a bit fatigued as well as have difficulty concentrating. Sometimes when I wake up and stand up I feel dizzy or I will have tingling in my feet. I also have issues with anxiety that definitely are linked to some of my GI distress as well, though.

 

I did go to a family doctor and I will be going to get blood tests done for several things including TSH, ANA, iron and b12 levels, CBC, CMP, wheat allergen, and of course Celiac. I guess it's just weird that I was talking about all my symptoms and that I feel almost completely fine now. I know the symptoms are varied for Celiac, but does this seem like it really could be the case?

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My take on that list of symptoms is that, on their own, they could be anything, but combined, make a food intolerance a likely suspect, with gluten high on the list. Just don't go gluten free before testing is completed. And best of luck.

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My celiac symptoms would wax and wane.  They were not static. Do not dicount them just because they change - I think it's a good idea to get tested.  

 

Dizziness upon standing is called postural hypotension.  It can also be linked to adrenal issues. Could be something to mention to the doctor.

 

Good luck. And ditto NatureChick - don't go gluten-free yet!

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I know for the tests I need to still be on gluten, so I haven't gone gluten-free yet. I've been eating lots of it. Thanks for the answers. I'm getting blood work done tomorrow, so hopefully I will have some answers soon!

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Try to ensure they run as many tests as possible:

tTG IgA and IgG

DGP IgA and IgG

EMA IgA

total serum IgA (control test)

AGA IgA and AGA IgG (older and less reliable test)

 

Let us know your results.  Good luck!

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I haven't heard back about my results yet, but I believe I will soon. I found out that the panel that they took only includes DGP IgA, tTG IgA, and total IgA, but if total IgA is deficient, they will do the DGP IgG test. This past week has been really strange with symptoms. GI problems have minimized a lot, but I've been getting a lot of fatigue, muscle aches, pulsating pains throughout my body, headaches, leg and hip pain, tingling in extremities, and my shoulder has stabbing pain that comes and goes. My anxiety is also acting up and my parents think I'm being paranoid. I don't think so! 0_o

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I just got my lab results back, but I haven't discussed them yet with my doctor. Most of the results look like they are in the normal range. The Celiac panel came back negative. This is what it shows:

 

Endomysial Antibody IgA - Negative

TtG IgA - <2
Serum IgA - 137

 

My B12 levels are low-normal at 284 and my bilirubin is just outside of the top of the range at 1.3. WBC count is low-normal at 4.0. My iron levels are fine (88) and everything else looks except for a few levels that look on the low side of normal, but nothing else is outside the range. The B12 could possibly be the cause of not taking my B12 pills as much as I should (I take sublingual) because I am vegan and I don't get it from any other source.

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Do you happen to know what the ranges are for those labs?  That can be helpful.

 

The tTG IgA and EMA IgA are very very similar tests.  I think in two years of being on these boards, I have only seen one situtation where someone had a positive EMA IgA when the tTG IgA was negative; in fact they usually do not run that test if the tTG IgA was negative.

 

It is a shame that they did not run more tests. Some who are negative in the tTG IgA are positive in the DGP tests. Others who are negative in the IgA based tests (tTG IgA, DGP IgA, etc) are positive in the IgG based tests (DGP IgG) even if they are not IgA deficient.  And then there are those who have all negative blood tests but a positive biopsy...

 

Is there a chance that they will run more tests or the biopsy? If so, don't go gluten-free yet.

 

If the doctors will not run more tests, which many refuse to do, then I think you should go gluten-free anyways. Give the diet at least 3 months, 6 is better, and then judge if it has helped you. Keeping a food and symptoms journal can be very helpful at that time because some symptoms change so slowly that you do not notice it happening.  If after a few months you are feeling better, you could take that evidence to the doctor and he might declare you a presumed celiac or one with NCGS.

 

Low B12 is often a sign of celiac disease, but not always (I tested high) - as you said, it could be due partially to your vegan diet.

 

Are the doctors doing anything to keep an eye on your elevated bilirubin?  I think that usually means your liver could be having a problem, so it could be worth looking into.  And yes, that could be a by-product of untreated celiac disease.

 

A low WBC count could be due to many things from being very healthy to fighting a sickness to things caused by celiac disease like vitamin deficiencies or hypersplenism.  I would keep an eye on that too. Get it rechecked after being gluten-free for a few months. http://www.mayoclinic.org/symptoms/low-white-blood-cell-count/basics/causes/sym-20050615

 

I also wanted to mention getting checked for H pylori.  or SIBO.  That infection could cause the symptoms you have and would need to be treated.

 

Hang in there. I know it is really frustrating not to get the results you expect, especially when the results still leave room for lots of doubt.  Hang in there.

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Here are the ranges:

 

TtG IgA - 0-3

Serum IgA: 91-414

B12: 211-946

Bilirubin: 0.0-1.2

WBC: 3.4-10.8

Iron: 35-155

 

My GP is not running more tests as of now, but I've been referred to a GI specialist and it's very possible that she will run more tests and/or do an endoscopy and she will be looking into my bilirubin level to see if it's of any concern. I'll also start taking the B12 supplement daily and getting it retested in a few months. The earliest appointment I can get is in early August, so I'm not going gluten-free just yet.

 

I think my GP mentioned that it might be a good idea to do a 2 week gluten-free trial if the biopsy turns out negative to see if my symptoms improve. A longer trial like you said sounds like a great idea. I was actually going to be tested for those infections, but my GP decided against it when she went over my symptoms again because they were intermittent. 

 

Thanks for the advice, nvsmom. I really appreciate it!

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That's too bad you have to wait so long to see the GI. For the sake of test accuracy, I agree that it is smart to keep eating gluten - as long as you body can take the punishment that is.

A gluten-free trial really should be a few months. At two weeks gluten-free I was just inching off withdrawal ( of gluten or carbs or sugar... Who knows) and I was still feeling worse than before I went gluten-free. For things like blood chemistry changes, it really does take a few months of eating gluten-free to get there.

BTW, my symptoms were intermittent too, but became more frequent and consistent in my fourth decade of the disease. Symptoms of almost any disease will wax and wane - lupus, arthritis, diabetes, etc. doctors seem to forget that diseases do not always progress in a linear fashion.

Hang in there. :)

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