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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?  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

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Hi everyone. I'm a nineteen year old female.

A year ago I began to get lots of stomach pain, constipation, and diarrhea. I also experienced an increase in fatigue, anxiety, and depression. I also have autism, diagnosed at age thirteen.
A few weeks ago I got blood test results that strongly suggested the possibility of having Celiac disease.
My endoscopy and colonoscopy are scheduled for July 11. I'm so nervous. Hoping the doctor will be able to tell me that they know what's wrong.

Looking for support, but if anyone else is going through similar stuff, feel free to message me or post on this thread- either way. :)

 

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Welcome, Valerie!

It sounds like you may have a Celiac diagnosis coming your way.  Before your endoscopy, go ahead and ask your doctor how many biopsies he/she will be taking of the small intestine.  The more the better- the University of Chicago Celiac Disease Center recommends 6.

 (  http://www.cureceliacdisease.org/archives/faq/what-is-an-endoscopic-biopsy     and http://www.cureceliacdisease.org/medical-professionals/guide/diagnosis for your reading pleasure)

 

Once you hear back about the results, let us know!  You may want to start reading through things now, and if you do indeed need to make the change to a gluten-free diet, we will be here to answer any questions you and your family have!  :)  And don't worry about the endoscopy/colonoscopy.  Usually they put you to sleep and you wake up like nothing happened.

 

Laura

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Thank you so much for the reply- the number of biopsies is not something I had thought about. I'll make sure to check in with them about that.

I'll keep people updated. I did go to a book store near me and I discovered a book called Jennifer's Way that talks about celiac disease. So I bought that and have begun reading it. Has anyone else ever read that book?

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I have heard her book is good, but I haven't read it.  Another good one that came out recently and many people on here have been recommending is Gluten Freedom by Dr. Alessio Fasano.  If you do go on a gluten-free diet, I highly highly recommend the Americas Test Kitchen gluten-free cookbook.  It is amazing and explains things very well.  

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I got the book on my kindle, I read it in 2 evenings, I COULDN'T PUT IT DOWN. I felt like I was reading my own story, as Im sure many others would feel. Alot of helpful information, but more than anything it made me feel like I wasn't a freak and I wasn't the only one who had such a weird childhood due to being undiagnosed celiac.

 

The endoscopy is a breeze really. I am deathly afraid of needles, so the IV was the worst part. I just took a little nap and it was all over, my throat was a bit scratchy but that was it. I was really hungry because I couldnt eat that morning. The post opp nurse gave me gluteny crackers and cookies when i woke up, even though i told the pre op nurse and intake nurse that i cant have gluten. Iam glad i brought my own snack. You might want to bring a jello or something like that. I brought jello and rice crackers with hummus.

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Laura-    I will absolutely look into the books you suggested. It's something to do while waiting for answers (though hopefully the doctors will be able to tell me Friday. Do the doctors sometimes make people wait until they have talked with other doctors or something?)

 

To user001-  I totally agree- Jennifer's Way was that type of book that hits so close to home, and now I don't feel like a weirdo for requesting tests instead of waiting around for doctors to telll me what to do. About the bring a snack along thing, WOW that's an amazing idea. A very valid point- otherwise the nurse would be telling you to eat exactly what you shouldn't eat.

Thanks everyone for the great replies- keep them coming- it's so nice to finally have people to relate to in this way. (some of my friends that I see in my day to day life think I've lost my marbles)

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Took 10 days to get results back. I assume it's usually quicker.

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Update: the endoscopy and colonoscopy went smoothly. Results will be here in 7 days, so this Friday will be the big day! Thanks to all who have commented on this thread so far. I bought Gluten Freedom and it is a very insightful book- definitely worth every penny.

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    • Hello all! I am new on here, and I was wondering if it worth a look for me to get tested for celiac disease. I've been experiencing severe stomach aches accompanied by issues with loose stool, constant fatigue, lots of infections, worsening of skin on my face, frequent nausea, lots of trouble losing weight. I'm asking because I was feeling better at home from vacation after having a very rough semester at school and I'm not very good at keeping track of what I eat typically, but at home it is mostly vegetables and meat, with the occasional rice thrown in. This morning I had my first bagel in months and was extremely nauseous with severe pains and urges to run to the bathroom.  Do y'all think it is worth a try to get tested for celiac disease or some type of gluten intolerance? I'm so tired of being sick and not knowing why... Thank you <3 
    • LexieA, I agree with Plumbago. The symptom's of low stomach acid and high stomach acid are similar so it is easy to confuse the symptom's of one as the other. Dr. Myatt explains this well in her online article about stomach acid. http://healthbeatnews.com/whats-burning-you/ quoting "But My Symptoms Feel Like Too Much Acid…" Strong stomach acid and pepsin quickly "emulsify" fats and proteins, making them ready for the next step of digestion, passage into the small intestine. When these digestive factors are weak, food remains in the stomach for longer and it begins to ferment. Gas pressure from the fermentation can cause bloating and discomfort and can can also cause the esophageal sphincter to open, allowing stomach contents to "backwash" into the esophagus. Even though weak stomach acid is the central cause of this, even this weak stomach acid, which has no place in the esophagus, will "burn." This burning sensation confuses many people, including doctors, who then "ASSuME" that excess acid is to blame. Too little acid, resulting in slowed digestion, and gas which creates back-pressure into the esophagus is the real cause of almost all "heartburn" and GERD." so  you can see how they can easily be confused for each other. you no doubt are having stomach acid issues but it is because it is too little or too much? Timeline helps us determine which it is. If it happens when we eat something it is already to low to  digest the food we are eating. if eating something cause the heartburn/gerd to improve (especially meat) then your stomach acid is really too high especially if this happens between meals. because eating something will naturally dilute/lower the stomach acid pH. I wrote about my stomach acid being misdiagnosed on my celiac.com posterboy blog. ( have summarized most of what you need to know in this reply but the post is still there if you want to study it more for yourself. if your not taking an antacid now then taking BetaineHCL should improve digestion. If it does then raising your stomach acid by lowering you pH should improve your digestion. study on the best way to take powdered stomach acid before trying this. but I found taking 3 to 4 capsules in the beginning was easier than taking only 1 or 2 in the beginning .. .  until I could back it down to only needing one per meal or now none per meal to aid digestion. which is what we are shooting for.  The place where our body is now producing our stomach acid naturally at a healthy level. if you feel a "warm sensation" in your stomach you have reached a good level. I hope this is helpful. I only know it helped me. *** this is not medical advice but I hope you have as a good experience with it as I did. Usually peopledon't  have a trouble taking BetaineHCL unless they have an ulcer or already taking PPI's which are actually lowering  their stomach acid contributing to a viscous cycle of being locked into taking PPI's long term. if PPIs are taken for more than 6 months they can be almost impossible to stop/quit because of the acid rebound people experience when trying to stop taking them cold turkey and why they recommend stepping back doses by 1/2 gradually so they don't get overwhelmed by the stomach acid your stomach is  able to produce again naturally itself (hopefully). . . if taking betaineHCL jump started your ability to produce stomach acid again. . . if not taking betaineHCL (Powdered Stomach Acid) can replace what the body is missing much like taking a hormone. chris kresser has a good online article on this subject as well. https://chriskresser.com/what-everybody-ought-to-know-but-doesnt-about-heartburn-gerd/ he says it well. quoting chris kresser. "If heartburn were caused by too much stomach acid, we’d have a bunch of teenagers popping Rolaids instead of elderly folks. But of course that’s the opposite of what we see." **** this is not medical advice but I hope it is is helpful. posterboy by the grace of God, 2 Timothy 2:7 "Consider what I say; and the Lord give thee understanding in all things".  
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    • I am sorry that I was not clear.    I only mentioned  your diagnostic background, not to discredit you, but because without any lab results (other than a positive gene test), how can you be sure that gluten (shampoo containing wheat protein) was the actual culprit (not a guess) of your symptoms?  It is common for celiacs to receive follow-up antibodies to monitor their dietary compliance.  This is not perfect, but it is the only tool in the toolbox for now.   My husband has been gluten free 12 years prior to my diagnosis.  He went gluten free per the poor advice of his GP and my allergist.  So, I am not trying to discount your diagnosis at all.  I am just trying to see if other lab tests (e.g. liver tests that were elevated previously for you when you were still consuming gluten) were measured after your shampoo exposure.   I am curious because I have had issues over the last year.  I was glutened last January, had the flu, a tooth infection, a cold and a tooth extraction, three rounds of antibiotics (verified to be gluten free) within a month or so.  Like, you, I am very careful.  I have no idea as to how I was exposed.   The last time I ate out was a year ago and even then it was at at 100% gluten free restaurant.   My hubby did not have any symptoms at this time.  He is like my canary.    I went to my GI and my DGP IgA was off the charts even some three months later.   My celiac-related symptoms diminished in three months, but I struggled with autoimmune hives for six.  My GI offered to do an endoscopy in the summer.  Instead I chose to follow the Fasano diet.  I still was not feeling well.  In December, my antibodies were 80.  They were either on a decline or they were increasing again.  I opted for the endoscopy.  My biopsies revealed a healed small intestine (you could see the villi on the scope too).  But I was diagnosed with chronic gastritis and had a polyp removed.   So, all this time I thought my celiac disease was active, but it was NOT the source of my current gut issues.   Again, my apologies.  I just wanted to know how you know for SURE that hydrologized wheat protein from someone else’s shampoo and conditioner could reach your small intestine to trigger an autoimmune reaction.  Maybe, like me, Gluten was not the actual culprit.    
    • The reason I think it was the shampoo? Process of elimination. Our house is almost entirely gluten free (except for this shampoo which slipped through the cracks until I read the ingredient label). My husband has bread that he eats at lunch, but he practices something that resembles aseptic technique from the lab when he's making his sandwiches. He's been doing this for years now and I've never been glutened from within my home. The previous week I hadn't eaten out, I cooked all my food, I don't eat processed food and I never eat something from a shared facility.  Usually if I get glutened it's a single dose sort of thing and it follows a very predictable course, to the point where I can estimate when I got glutened within 24 hours of when it happened. However, this time, I was feeling achy and arthritic and moody for about a week before it got bad enough for me to recognize it as the result of gluten exposure, at which point we went searching and found the shampoo (and conditioner, which does leave more of a residue than shampoo), which he immediately stopped using. Within three days I was feeling back to normal (which is the usual course for me).  Sure, it could have been something else, but I know how sensitive I am, and, as silly as it sounds, it was the only thing that made sense. The other thing you said: You're correct, mine was not a rock solid celiac diagnosis, but I have no doubt that gluten is the problem. I was SICK. I went through two different gluten challenges in an effort to get a more straightforward diagnosis during which I was a barely functioning human being. Consuming gluten may not have given me blunted villi or elevated antibodies, but it did inflame my gut, and actually started to damage my liver. If you look at my diagnosis thread, I had elevated liver enzymes, which have been correlated with celiac disease in the past. There was no alternative explanation for the liver enzymes, he checked EVERYTHING.  I too am a scientist and I have spent a lot of time with the literature trying to make sense of my condition.  https://www.ncbi.nlm.nih.gov/pubmed/26150087 I also have no doubt that gluten was damaging my intestines in some way, as any prolonged gluten exposure in the past has inevitably been followed by a severe FODMAP intolerance that goes away once I've eliminated the gluten and given myself a month or so to heal.  I also had a very fast diagnosis following the onset of symptoms (~1 year) so it's possible that the disease never had a chance to manifest as full celiac. I wasn't willing to eat gluten long enough to find out. As a result of my diagnosis, hazy as it was, I am *meticulously* gluten free. It is not a fad for me. I don't occasionally cheat. It is my life, for better or worse. All of that being said, I'm not sure what my diagnosis has to do with your question. You say you're not trying to be rude, but when you bring up my diagnosis in a thread that has nothing to do with diagnostics, it seems like you're trying to undermine the validity of my disease or the validity of my input in this forum. If I'm being hypersensitive, I apologize, but that's how you came across on my end. I'll admit that the fact that my diagnosis wasn't more straight forward does make me a bit defensive, but I promise that even if I didn't have a solid diagnosis, I interact with the world as though I did, and I'm not out there giving people the wrong idea about celiac disease by not taking it seriously. If there was a connection between your question and my diagnostics that I missed I would appreciate you giving me the chance to better understand what you were asking. 
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