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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 FREE Celiac.com email alerts   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 Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Could It Be Celiac?
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sillisent    0

Hi- I'm new here, but I'm struggling to find what's wrong with me.

For the past year, I get extremely fatigued after eating (within 2 hours). It's gotten to the point that I can't keep my eyes open, I can't even sit up sometimes. It's worse after I eat things like pasta.

Recently, I was 'diagnosed' with IBS-C (chronic constipation). By 'diagnosed', I mean that the doctor did a blood test and said it came back normal, so I had IBS-C. While I agree that IBS-C describes what I have, it doesn't explain what goes with it.

I also had blood tests done that revealed low potassium, as well as a couple other vitamins (don't remember which ones).

At first they thought it was Diabetes because I had elevated blood sugar, but that went away and they confirmed it was a one-time high after 3 normal fasting blood sugars.

I have a lot of hair loss over the past month, which is the same time that I've been having worse and worse fatigue after eating. They did a thyroid test, which came back normal.

I'm getting so frustrated- I dread dinner every day, because it's the worst meal of the day for me. I used to just get by with a nap at night, but now I'm starting to dread lunch and breakfast, too. I am starting to experience generalized muscle weakness, and when I mentioned it to my dr a couple weeks ago he said it was probably unrelated and due to poor sleep quality or stress.

Then a few days ago, I stumbled across some info that said celiac and IBS-D and -C are often times co-occuring. While just a few studies doesn't mean I have it, there are some things that are lining up- but I don't know how or what to ask my doctor.

Any suggestions?

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Persei V.    8

You should ask your doctor about the possibility. Maybe schedule an endocospy and see what you'll get. Don't go gluten free before because you will have to be on gluten for the tests to work, and it will be worst if it's indeed some sort of gluten sensitivity...

Furthermore, if the tests come back negative and you still think it could be something to do with gluten, go gluten free regardless of the results. Then wait and see.

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mushroom    1,205

Welcome, sillisent!

Well, the first thing to ask your doctor for is a copy of the results of all the tests he ran on you. Find out what celiac tests he ran (if any), and if you would care to share, post your results here on the board. We would be happy to have a look at them.

I assume IBS-C means irritable bowel syndrome with constipation and as you seem to feel, it is not really a diagnosis at all. It just means that he has not found out why your bowels are irritable and constipated. If you are low in nutrients -- well, that is one of the side-effects of gluten intolerance, whether celiac or not. So is hair loss and fatigue. Some celiacs have constipation, some diarrhea, and some both alternating.

So let's see what he tested and what results came back and we can advise from there. Sometimes doctors run only the one celiac test, the tTG, when they need to run the full panel of five tests. You can test negative on some and positive on others.

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Perspective    1

Hi honey, I'm new here too, but also new to the celiac world. It's funny that you mention this problem you're having because I just watched a video today that seems to correlate with your problem. I'll post it here, and just hang in there. She's very articulate and describes what was happening to her really well. Here it is:

I have always had hypoglycemia, (low blood sugar). They tested me a loooong time ago and I almost passed out during testing. As I have recently discovered I have a problem with gluten I noticed certain things changing when I removed the gluten. One thing was that I no longer had the huge hunger cravings accompanied by the hypoglycemia episodes I would have. In fact, I had no shakes, no mood swings, no nothing. My conclusion: my blood sugar stablized.

Well, this girl talks about reactive hypoglycemia, which is where she would feel awful AFTER eating, especially after eating gluten.

Anyway, I see nothing wrong with cutting out gluten for 30 days to see how you feel, and the re-introduce it to see how you feel after. You will learn a lot. This is how I discovered I have a problem with it. However, you might want to get your blood sugar checked before hand, and obviously just discuss all this with your doctor to see if anything else is going on.

(I see you've had the blood sugar fasting... sorry about that... still makes me wonder!) Would still think about what this girl has to say and try a gluten-free challenge.

Good luck to you! :-)

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MartyrMom2    0

Hi- I'm new here, but I'm struggling to find what's wrong with me.

For the past year, I get extremely fatigued after eating (within 2 hours). It's gotten to the point that I can't keep my eyes open, I can't even sit up sometimes. It's worse after I eat things like pasta.

Recently, I was 'diagnosed' with IBS-C (chronic constipation). By 'diagnosed', I mean that the doctor did a blood test and said it came back normal, so I had IBS-C. While I agree that IBS-C describes what I have, it doesn't explain what goes with it.

I also had blood tests done that revealed low potassium, as well as a couple other vitamins (don't remember which ones).

At first they thought it was Diabetes because I had elevated blood sugar, but that went away and they confirmed it was a one-time high after 3 normal fasting blood sugars.

I have a lot of hair loss over the past month, which is the same time that I've been having worse and worse fatigue after eating. They did a thyroid test, which came back normal.

I'm getting so frustrated- I dread dinner every day, because it's the worst meal of the day for me. I used to just get by with a nap at night, but now I'm starting to dread lunch and breakfast, too. I am starting to experience generalized muscle weakness, and when I mentioned it to my dr a couple weeks ago he said it was probably unrelated and due to poor sleep quality or stress.

Then a few days ago, I stumbled across some info that said celiac and IBS-D and -C are often times co-occuring. While just a few studies doesn't mean I have it, there are some things that are lining up- but I don't know how or what to ask my doctor.

Any suggestions?

Welcome fellow newbie! I'm sorry you are feeling so terrible! I can totally relate to what you're going through though. I was also diagnosed with IBS following an endoscopy and colonoscopy in January '06. I thought IBS was a diagnosis of exclusion, meaning they rule everything else out first. Not so in my situation! No bloodwork, no biopsy, nothing but scopes. I tell you this because some physicians can miss things when trying to find out what is wrong with us. I agree with the other posters. You need to get copies of the labs that were drawn, both your thyroid and celiac. It's possible you didn't receive the comprehensive celiac panel. If so, you could have a false negative. Like you, I was diagnosed with hypokalemia, July 2007. Did you have episodes of diarrhea too? That could explain the hypokalemia and gluten could very well be the culprit. That was the case with me, the diarrhea. Also, the exhaustion and hair loss you describe, you could very well be speaking on my behalf. In October '08, I went to see my physician due to a growing fatigue and hair loss. I thought for sure I had anemia or cancer, something. It was that bad! Anyway, the physician agreed to test me and after examing me, she suggested testing my thyroid as well. My iron levels were w/in range, but my TSH was 14.6. I have been on Synthroid every since. Like the celiac panel, a comprehensive thyroid panel needs to be ran too. Did they check your thyroid antibodies? You could very well have a TSH within normal range, but be producing thyroid antibodies and that could be causing your symptoms. I still have yet to get my antibodies tested. I didn't mean to make this post about me. I just want you to know that you are not alone. You can't be dismissed without being properly and thoroughly tested. I hope you are able to find out what is going on soon so you can start to feel better!

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sillisent    0

Well so far he's only run a comprehensive metabolic panel and the fast blood glucose. I'm waiting to get a copy of the results, but I'm pretty sure that he hasn't even tested for celiac yet. It took me a long time for him to do tests, and when my blood glucose ones came back normal, I think it convinced him it's just me being too sensitive or picky. I'm going back in a couple weeks so I'll ask him about celiac, I just don't know if he'll even believe me.

However, at a previous appointment he was considering sending me to a gastroenterologist- would they know more about celiac?? I can only hope I'd have more luck with them.

At this point, even my boyfriend and family are getting annoyed with my constant tiredness. When they thought it might be diabetes, I was almost relieved- at least THEN I'd have a diagnosis and would know it's not all in my head.

Also, I've thankfully not often experienced the D side of IBS.

Also, are the tests they do for celiac all blood tests (except the endoscopy, of course) ? My doc doesn't mind sending me for blood tests- as evidenced by the repetition of glucose tests.

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mushroom    1,205

Well, that is pretty standard - celiac is usually the last thing they think to test for. Yes, the tests are all blood tests and consist of the following:

  • AGA (antigliadin antibodies)-IgA
  • AGA-IgG
  • tTG (anti-tissue transglutaminase)-IgA
  • EMA (anti-endomysial antibodies)-IgA
  • DGP (deamidated gliadin peptide)
  • Total serum IgA

You should make sure he runs the whole panel, because you can test positive on one or more and negative on others. :unsure: Not all gastroenterologists are celiac savvy, but if your doctor feels out of his depth with celiac it would not be a bad idea to take the referral; you might luck out. You could ask your local celiac society for a recommendation on a good GI, and then ask your doctor to refer you to him.

And don't let anyone tell you it's all in your head - it's in your body, gosh darn it!!!

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MartyrMom2    0

Well so far he's only run a comprehensive metabolic panel and the fast blood glucose. I'm waiting to get a copy of the results, but I'm pretty sure that he hasn't even tested for celiac yet. It took me a long time for him to do tests, and when my blood glucose ones came back normal, I think it convinced him it's just me being too sensitive or picky. I'm going back in a couple weeks so I'll ask him about celiac, I just don't know if he'll even believe me.

However, at a previous appointment he was considering sending me to a gastroenterologist- would they know more about celiac?? I can only hope I'd have more luck with them.

At this point, even my boyfriend and family are getting annoyed with my constant tiredness. When they thought it might be diabetes, I was almost relieved- at least THEN I'd have a diagnosis and would know it's not all in my head.

Also, I've thankfully not often experienced the D side of IBS.

Also, are the tests they do for celiac all blood tests (except the endoscopy, of course) ? My doc doesn't mind sending me for blood tests- as evidenced by the repetition of glucose tests.

You had mentioned in your first post that your physician diagnosed you with IBS based on a blood test, so I had assumed it was a Celiac test. I'm sorry for the confusion. Wonder what test it was? Apparently not all gastroenterologists are aware of Celiac Disease. Mine certainly wasn't. He never even mentioned the possibility of Celiac Disease. No blood work or biopsy. I was diagnosed on the basis of a clear endoscopy and colonoscopy, but he didn't take any tissue samples during my upper scope, so how can I know for sure? I guess that's why a lot of people are initially misdiagnosed with IBS. I personally believe IBS is a symptom, not an acceptable diagnosis. As a general rule, gastroenterologists specialize in diseases of the digestive tract. Maybe you'll get a good one! If your TSH was w/in normal range, please consider getting a thyroid antibody test too. That is, if that hasn't been done already. It can show you if you are producing antibodies against your thyroid, which could be causing your exhaustion and hair loss. Of course, celiac w/ its associated vitamin deficiences can probably cause these symptoms. I've heard others on here refer to IBS as I Be Stumped, which I absolutely love! I like to refer to it as Idiotic Bull S***! :lol:

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GottaSki    459

  • AGA (antigliadin antibodies)-IgA
  • AGA-IgG
  • tTG (anti-tissue transglutaminase)-IgA
  • EMA (anti-endomysial antibodies)-IgA
  • DGP (deamidated gliadin peptide)
  • Total serum IgA

Welcome!

You should definitely get tested.

In addition to the Full Celiac Blood Panel, you can ask your primary to order vitamin/mineral blood tests. Low nutrients are another strong indication of Celiac Disease. Celiac damages the small intestine which prevents proper breakdown and absorption of nutrients. These were run for me at diagnosis and check ups: Bs, D, K, Iron, Ferritin, Copper and Zinc.

Once all the testing is done - even if the tests are negative you should remove ALL gluten for three months (six is better), because elimination of gluten is the only test available for Non-Celiac Gluten Intolerance which can have many of the same symptoms of Celiac Disease.

Good Luck :)

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sillisent    0

Thanks for all the information.

The reason he said it was IBS based on blood work was because he thought diabetes was causing constipation, and once he ruled that out, I guess the only logical conclusion is IBS?

:rolleyes:

I'll be sure to ask for all the celiac tests!! I'd hate it if he only did one and it was negative and he brushed it off. And I had a thyroid test a couple of years ago which was normal, but I'll ask about that, too, since health is always changing.

I'll be sure to update once I get all the tests done. Thanks everyone so much for the help!!!

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