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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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Canceling My Colonoscopy
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10 posts in this topic

Hi everyone,

I'm supposed to have a colonoscopy tomorrow, but I'm canceling it. Besides my Dr. being condescending...I've since realized that a colonoscopy is not the test to get for Celiac testing, and that is how he says he tested for it last time.

I am also too weak for the prep. required for the test. A whole bottle of Miralax and 4 Ducolax tablets. I'm already having D 5-10 times a day (the other day, 12). I don't have enough strength not to eat AND take all that to "flush" out my system.

Meanwhile, while I postpone the test(s) and look for a new GI, I was wondering, on average, how long it takes to see results once one goes gluten-free?

I've been gluten-free before, and my stomach regulated itself. It wasn't until this doctor told me to eat gluten again that my tummy started acting crazy.

What actually happened was that I ate gluten during my pregnancy, and I had no bad reactions. Once my son was born, my symptoms came back. This doctor told me it obviously wasn't gluten sensitivity or intolerance or I would have been sick during my pregnancy. Nonetheless, gluten-free is the ONLY time my stomach has functioned "normally." Any thoughts? Any ideas on when I should start feeling better after going gluten-free again...I know it varies by person, but is there a "general" time-frame? Thank you. :)

-Julie

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Your doctor does sound clueless if he was looking for celiac with a colonoscopy he wasn't actually looking for celiac at all.

I find it interesting that your symptoms resolved while you were pregant and resumed the baby. I don't know if it is common but I saw the same effect when I was preggers with my second child. I had horrible morning sickness but once that was over I felt better than I had in a long time. Of course symptoms came back with a vengance after she was born.

Have you had a celiac panel done? Your regular doctor or even your OB/GYN could order it. You do need to have that done before you go gluten free of course.

As far as healing times goes it can vary. I had a resolution of my D and migraines within a short time, like about 2 weeks but the rest of the issues took much longer. Healing can take some time but if you go with a whole food unprocessed diet and do the things you need to do to be safe at home that will help speed things along.

I wish you the best and although I think you did the right thing to cancel with this clueless doctor do be sure to find a new GI who is more celiac savvy in case your issues don't resolve. You may want to consider finding a new one before you go gluten free if you feel you need a formal diagnosis with the endo. Some GP or Internists may diagnose based on blood test or symptoms resolving gluten free but not all will.

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Your doctor does sound clueless if he was looking for celiac with a colonoscopy he wasn't actually looking for celiac at all.

I find it interesting that your symptoms resolved while you were pregant and resumed the baby. I don't know if it is common but I saw the same effect when I was preggers with my second child. I had horrible morning sickness but once that was over I felt better than I had in a long time. Of course symptoms came back with a vengance after she was born.

Have you had a celiac panel done? Your regular doctor or even your OB/GYN could order it. You do need to have that done before you go gluten free of course.

As far as healing times goes it can vary. I had a resolution of my D and migraines within a short time, like about 2 weeks but the rest of the issues took much longer. Healing can take some time but if you go with a whole food unprocessed diet and do the things you need to do to be safe at home that will help speed things along.

I wish you the best and although I think you did the right thing to cancel with this clueless doctor do be sure to find a new GI who is more celiac savvy in case your issues don't resolve. You may want to consider finding a new one before you go gluten free if you feel you need a formal diagnosis with the endo. Some GP or Internists may diagnose based on blood test or symptoms resolving gluten free but not all will.

Interesting that you had the same results when you were pregnant! I had horrible morning sickness through my first trimester and lost a lot of weight, and then I started craving Krystal hamburgers (like White Castle burgers). I could eat 10 at a time! But amazingly, I wasn't doubled over with pain and diarrhea.

I have had a blood panal done by a good GI who has since moved out of state; his results came back partially positive (which means inconclusive), but he told me to go gluten-free because of my family history of celiac and GI problems. He also said that my personal symptoms and other autoimmune diagnoses led him to believe that "in [his] professional opinion," if I didn't start the diet, he would be seeing me back in five years with full-blown celiac with intestinal damage.

Sigh....I just want to feel better. :unsure:

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it depends on if you're the kind of person who needs an Official Dx.... if you do- i would get to a different GI ASAP, stay on the gluten & get the endoscopy.... if you dont need the dx, then go off the gluten now.... that's a hard decision- and up to every individual...

anyways- my intestinal issues improve 95% with 2-4 weeks of going gluten free!

i think it was a good decision for you to cancel your Colonoscopy- what a strange doc. I dont know your age, or health- but it IS good to the Colonoscopy to rule out other illnesses.... especially if you have Celiac- its good to check the colon to make sure there's been no damage. if you need the DX- then change docs now, stay on gluten, and get both procedures done-

OR, if u dont need the dx.... get healthy now OFF GLUTEN... and get the colonoscopy later when you're healed enough to handle the Prep

best of luck to you :)

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I have had a blood panal done by a good GI who has since moved out of state; his results came back partially positive (which means inconclusive), but he told me to go gluten-free because of my family history of celiac and GI problems. He also said that my personal symptoms and other autoimmune diagnoses led him to believe that "in [his] professional opinion," if I didn't start the diet, he would be seeing me back in five years with full-blown celiac with intestinal damage.

I'm confused. Why are you gluten challenging when your doctor told you that you were latent celiac? Did he explain that celiac disease is progressive and the more gluten you expose yourself to, the worse the autoimmunity can become?

Get off the stuff and get well again. Things should start to settle down in a couple weeks. If you're so weak on gluten challenge that you can't even tolerate a bowel prep, you have your answer about celiac anyway. Do yourself a favor and refuse further challenges to avoid making your gluten problems worse.

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I'm confused. Why are you gluten challenging when your doctor told you that you were latent celiac? Did he explain that celiac disease is progressive and the more gluten you expose yourself to, the worse the autoimmunity can become?

Get off the stuff and get well again. Things should start to settle down in a couple weeks. If you're so weak on gluten challenge that you can't even tolerate a bowel prep, you have your answer about celiac anyway. Do yourself a favor and refuse further challenges to avoid making your gluten problems worse.

The reason I continued eating gluten after my pregnancy is because my new GI did bloodwork that came back normal (I had to change GI's once my other one moved out of state) and the new GI also told me that I didn't need to be gluten-free. :blink:

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That's confusing all right. :blink: The blood tests can shift around, especially anti-gliadin.

I think you have your answer about gluten, though. Feel better soon!

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Were you gluten free when you had the 2nd blood test done? If yes, it is supposed to come back negative. That does not mean it is gone, just that you are managing the diet well. Also, if the doc didn't run all the tests, he/she could have missed the one that was positive.

After learning from these folks and online journal articles, I would stay gluten free for life even if I only had one positive result.

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celiac being autoimmune, it is no surprise that it wanes during pregnancy.

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I became ill after a pregnancy. Been in poor health ever since. These stomach problems I'm having didn't start right away after the pregnancy though, but a few months afterward.

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    • Good advice Ennis!  I would add baking and freezing some gluten-free cupcakes to have on hand, so that she is never left out.  Be sure to read our Newbie 101 tips under the coping section of the forum.  Cross contamination is a big issue,  If the house is not gluten free, make sure everyone is in board with kitchen procedures.   Hopefully, your GI talked about the fact that this AI issue is genetic.   Get tested (and your TD1 child).  TD1 is strongly linked to celiac disease.  About 10% of TD1's develop celiac disease and vice versa.  Get tested even if you do not display any symptoms.    http://www.cureceliacdisease.org/screening/ https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/
    • What does weak mean?  Like you squat down and and you can not get back up?  Or are you fatigued?  When you said blood panel, was your thyroid tested?  Antibodies for thyroid should be checked if you have celiac.  So many of us have thyroid issues.  
    • We are not doctors, but based on the results you provided, you tested negative on the celiac screening test.  You could ask for the entire celiac blood panel to help rule out celiac disease.  The other IgA that was high?  It normally is given as a control test for the TTG IgA test (meaning if the celiac test results are valid).  In your case, the TTG IgA test works.  Outside of celiac disease, you might have some infection.  Discuss this with your doctor as he has access to your entire medical file.  I would not worry about it though over the weekend!  
    • See: http://www.cureceliacdisease.org/faq/can-a-skin-biopsy-for-dermatitis-herpetiformis-dh-confirm-celiac-disease-or-is-an-endoscopy-still-needed/ Take a copy of that with you or mail it to the doc. How many endoscopic biopsies did they take? Those with dh tend to have patchier damage than "normal" celiacs.
    • Ironictruth, I think that is a very insightful thought. since different antibodies present for different body systems all the ways gluten affects the body is still not well understood. Here is a case of presumably someone who had the gut damage of a celiac but also had neurological damage. http://www.nature.com/nrneurol/journal/v3/n10/full/ncpneuro0631.html entitled "A case of celiac disease mimicking amyotrophic lateral sclerosis" so it has happened in the literal but since this is not well understood people don't make the connection today. I would also point you to this hindawi article on the "Lesson's learned from Pellagra" but I am afraid we haven' learn't yet. https://www.hindawi.com/journals/cggr/2012/302875/ notice specially the 2.1 section clinical feature of pellagra and all the neurological symptom's once associated with a Pellagra patient. quoting "The neurological manifestation did not stop there because other degenerative conditions, such as an amyotrophic lateral sclerosis-like picture, were described, with fasciculation of the tongue and upper and lower motor neuron signs. Cerebellar syndromes occurred and vertigo was frequent. Headaches, sensory and pain syndromes, epilepsy, and involuntary movements were noted as well as sleep disturbances. Cord lesions were also seen, as was optic atrophy, so there were multiple sclerosis (MS), like variants." which tells me doctor's don't recognize pellagra today when they see it because they haven't seen it in 75+ years. ***this is not medical advice but read the hindawi journal on lesson's learned and I think you will see yourself in their many descriptions of all the way Pellagra presents itself to doctor's and patients still suffering today and you can see why it (like celiac) is hard to pin down today because it presents in so many ways it can be soo overwhelming and since vitamins are not a focus anymore today (especially b-vitamins) that today I believe we are doomed to repeat history's lessons unless the current generation learns again all the ways pellagra presents itself today. good luck on your continued journey. posterboy by the grace of God,  
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