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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.

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Hey all!

I got the results from my endo and colonoscopy and everything is normal; aside from gastritis. While I am glad that I'm healthy... I am frustrated with the fact that I don't have an answer still.

Meanwhile, in the conversation, the nurse practitioner that I saw said everyone thinks they have Celiac now because it's the cool thing to have; when in fact the same number of people have it - it's just that more people know about it now. I was slightly offended by that comment...

They are saying I am just suffering food intolerances and they did some blood work today. Due to scheduling issues, I wont be able to go in for the 3-hr breathalizer test until July 10th and a follow up the 19th (results).

She said lactose and fructose intolerances are very common. Perhaps there is a wheat intolerance? I know there is a problem with dairy but I am not sure how to pinpoint it in me. She said testing is good because you can find out exactly what is wrong instead of guessing via trial and error.

Any words of wisdom? I am glad it's not Celiac but I guess I feel skeptical of these tests, as I went gluten free for awhile.

Ho hum. I sound disappointed I am undamaged... and that's not the case. Just frustrated I will not know more for another month.

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Hey all!

I got the results from my endo and colonoscopy and everything is normal; aside from gastritis. While I am glad that I'm healthy... I am frustrated with the fact that I don't have an answer still.

Meanwhile, in the conversation, the nurse practitioner that I saw said everyone thinks they have Celiac now because it's the cool thing to have; when in fact the same number of people have it - it's just that more people know about it now. I was slightly offended by that comment...

They are saying I am just suffering food intolerances and they did some blood work today. Due to scheduling issues, I wont be able to go in for the 3-hr breathalizer test until July 10th and a follow up the 19th (results).

She said lactose and fructose intolerances are very common. Perhaps there is a wheat intolerance? I know there is a problem with dairy but I am not sure how to pinpoint it in me. She said testing is good because you can find out exactly what is wrong instead of guessing via trial and error.

Any words of wisdom? I am glad it's not Celiac but I guess I feel skeptical of these tests, as I went gluten free for awhile.

Ho hum. I sound disappointed I am undamaged... and that's not the case. Just frustrated I will not know more for another month.

I was looking back through some of your posts, and couldn't find where you might have posted any of your test results.

Have you gotten copies of those from your doctor?

You should get that, and also get the report on your endoscopy. Many is the person who had what is early damage, yet got an "all-clear" from their doctor.

Your doc might be one who only gives a diagnosis to someone with the most severe damage on the Marsh scale, and if you have minor damage he would not diagnose.

Just a thought.

On the other hand, you have gone gluten-free and felt well. If not celiac, you may be one of the "non-celiac gluten-intolerant" (NCGI) folks. It is a real condition, makes people sick and miserable, and the only cure is gluten free. The only difference is that a "NCGI" person doesn't get the villous damage.

You could always try an elimination diet, where you take all the known triggers (dairy, wheat, sugar, eggs, nuts, grains, whatever makes you ill) out of your diet, keep a daily food diary. Start adding foods back one at a time, maybe one a week. Keep track of your reactions. Might help you nail something down.

It is most frustrating, to be ill and not able to find an answer.

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Here is what my blood tests were:

Endomysial Anitbody IgA - Negative

t-Transglutaminase (tTG) IgA <2 U/mL (Normal range 0-3)

Immunoglobulin A, Qn, Serum 332 mg/dL (Normal 70-400)

By biopsy results today said:

Villous to crypt ratio: 2-2.5:1 (duodenum)

3:1 in another area of small bowel

I don't know what any of that means. :D

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Hey all!

I got the results from my endo and colonoscopy and everything is normal; aside from gastritis. While I am glad that I'm healthy... I am frustrated with the fact that I don't have an answer still.

Meanwhile, in the conversation, the nurse practitioner that I saw said everyone thinks they have Celiac now because it's the cool thing to have; when in fact the same number of people have it - it's just that more people know about it now. I was slightly offended by that comment...

They are saying I am just suffering food intolerances and they did some blood work today. Due to scheduling issues, I wont be able to go in for the 3-hr breathalizer test until July 10th and a follow up the 19th (results).

She said lactose and fructose intolerances are very common. Perhaps there is a wheat intolerance? I know there is a problem with dairy but I am not sure how to pinpoint it in me. She said testing is good because you can find out exactly what is wrong instead of guessing via trial and error.

Any words of wisdom? I am glad it's not Celiac but I guess I feel skeptical of these tests, as I went gluten free for awhile.

Ho hum. I sound disappointed I am undamaged... and that's not the case. Just frustrated I will not know more for another month.

I am in the same boat as you, I had testing done and everything came back "normal" My dr had no answer as to why I felt better when I went Gluten Free for 3 weeks. She made me feel like it was in my head that I felt better. So I came home and started eating gluten. I dont get deathly ill, I just feel BAD. like not normal, "off" and when I went gluten-free I felt AMAZING for the first time in years. That should tell me something but I have been raisied to trust drs so I am having a really hard time convincing myself that I should just go gluten free and be happy. I had some fried food today..I just feel awful. :(

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You know... in reading these lab results, it says things like and "mild inflammatory cell infiltrate primarily composed of lymphocytes and plasma cells accompanied by eosinophils" ... that along with the 2-2.5:1, not bad but something... "prominent lymphoid aggregates" ... it sure sounds like something other than 'everything is wonderful, have a nice day.' Not drastic ... but something (in combination with the symptoms, anyway!)

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You know... in reading these lab results, it says things like and "mild inflammatory cell infiltrate primarily composed of lymphocytes and plasma cells accompanied by eosinophils" ... that along with the 2-2.5:1, not bad but something... "prominent lymphoid aggregates" ... it sure sounds like something other than 'everything is wonderful, have a nice day.' Not drastic ... but something (in combination with the symptoms, anyway!)

Ummm...who did the interpretation of your endoscopy?

It looks to me, from different things I've found in GI journal articles (like this one, and from the Food Doc (Scott Lewey who has written for this site) that your "villous to crypt ratio" is less then good (Not necessarily dangerously bad yet, either). Normal should be 3:1, anything less shows shortening of the villi.

The presence of lymphocytes, plus shortened villi, should have been a red flag, in my opinion. Did they actually do a count of the lymphocytes? They should have.

Did they really send you on your way and say there's nothing more they can do?

I also think they should have done the anti-gliadin antibodies (deamidated gliadin peptides, IgG and IgA) along with your other tests.

The nurse was not nice to say what she said. So sorry you are going through this.

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It's really unfortunate that there's no test that's 100% accurate for Celiac! So many people don't get the DX they need to be healthy. Add in those that are gluten intolerant and there's an awful lot of folks feeling miserable with Dr.s telling them there's nothing wrong with them.

The breath test can tell if you're lactose or fructose intollerant, or if you have a small intestine bacterial overgrowth, depending on which solution they have you drink, but it doesn't tell you if you have an intolerance to any particular food, such as wheat or nuts, etc. You have to keep a log of what foods you eat and note any reactions. Many food reactions are delayed, making it harder to figure out.

The results of your scope seem to indicate something is irritating your system? Dairy can cause such results. Be sure to note your reactions to dairy, along with gluten.

I hope you can get this sorted out so you can start healing and feeling better. Having the medical people act like you're "pretending" to have an illness because it's in the headlines more lately is infuriating! :angry:

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It's really unfortunate that there's no test that's 100% accurate for Celiac! So many people don't get the DX they need to be healthy. Add in those that are gluten intolerant and there's an awful lot of folks feeling miserable with Dr.s telling them there's nothing wrong with them.

The breath test can tell if you're lactose or fructose intollerant, or if you have a small intestine bacterial overgrowth, depending on which solution they have you drink, but it doesn't tell you if you have an intolerance to any particular food, such as wheat or nuts, etc. You have to keep a log of what foods you eat and note any reactions. Many food reactions are delayed, making it harder to figure out.

The results of your scope seem to indicate something is irritating your system? Dairy can cause such results. Be sure to note your reactions to dairy, along with gluten.

I hope you can get this sorted out so you can start healing and feeling better. Having the medical people act like you're "pretending" to have an illness because it's in the headlines more lately is infuriating! :angry:

So, is this breath test a big waste of time? They said it's going to take 3 hrs. If it tells me I am lactose intolerant, I still wont know about the gluten, right?

Is my gut damaged by gluten or lactose? I know I have had lactose problems my whole life. This wheat connection began in the fall after I went through tremendous stress - which I have heard can kick it off. I have the lymphocytes in all of the biopsies, and they are high in my blood work.

Maybe I can just diagnose myself ... lactose and gluten. Ha!

Seriously though... is this test a waste of time?

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So, is this breath test a big waste of time? They said it's going to take 3 hrs. If it tells me I am lactose intolerant, I still wont know about the gluten, right?

Is my gut damaged by gluten or lactose? I know I have had lactose problems my whole life. This wheat connection began in the fall after I went through tremendous stress - which I have heard can kick it off. I have the lymphocytes in all of the biopsies, and they are high in my blood work.

Maybe I can just diagnose myself ... lactose and gluten. Ha!

Seriously though... is this test a waste of time?

If they are testing for lactose intolerance, the test should DX it. The problem is, The enzyme that digests lactose is made on the tips of the villi. If those tips are damaged from the protein in dairy, gluten, soy, or bacteria, it won't tell you which one is the culprit. It will tell you that lactose intolerance *could* be the cause of digestive upset. If you are only lactose intolerant, taking an enzyme would allow you to eat it without problems and feel fine.

IMO a breath test for a bacterial overgrowth would be more helpful as a DX for digestive/villi problems? Making it "official" that you are lactose intolerant won't really help all that much, but it will be something that your Dr. can write down as a DX for your symptoms. He can prescibe IBS medications for you, maybe reflux medication, and suggest you take enzymes...and send you on your way. These won't heal you if you have Celiac, rather they will ensure that your damage will progress until your symptoms can't be controlled by medications.

It irritates me that the Dr.s are trained to treat symptoms, rather than look for the cause of the symptom and fix that!

It's suggested that newly DXed Celiacs go dairy free for a while to let the villi heal so lactase is once again made, thus allowing the digestion of lactose. Once healed, some people can eat lactose containing dairy products just fine.

IMHO it sounds more likely to me that you have a problem with gluten and dairy? If you omit both from your diet and feel better, that would be your DX. You don't need permission from a Dr. to omit them.

Once you have your testing done, be sure to take probiotics every day. They help keep the the bad bacteria/yeast from taking hold and aid in digestion and immune fuction.

I say wait until after testing, because if they do a breath test for SIBO the probiotics throw off the results.

Stay gluten-free and dairy free for 3 months no matter what the tests say and see how you feel. Then reintroduce them one at a time and see how you react?

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Yes, I have a gut feeling (haha - couldn't resist) that it is a lactose/gluten issue. Lactose runs through our family and if I drink a glass of milk, I am sick in about ... well, almost immediately. I know the dairy thing exists. Though... it could be fructose I guess...

Argh. I just don't want to do this 3 hr thing if it doesn't tell me anything.

I guess I am done whining. I really appreciate your help.

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