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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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Hello, I came to celiac.com because I'm hoping someone can help me. I have not been diagnosed with Celiac disease.. mostly because I am 22 years old and do not have health insurance nor do I qualify for any state assistance..but it seems to make sense.
 
About a year and a half ago it began. I would feel fine, eat a meal, and vomit almost instantly. This continued to happen every now and then. It could be days or weeks apart. I haven't been able to drink cow's milk since I was twelve. It would make me throw up most times and if I had too much dairy from other sources (Pizza, ice cream) I would get sick as well. So I eliminated dairy. But it kept happening. As the weeks passed it became more frequent. So I started eliminating gluten in August. After a few weeks of that I felt great! It was then that I realized that I have hardly ever consumed a meal and not felt sick to my stomach. It was a revelation.... or so I thought. By December  I was vomiting again almost after every meal. I was exhausted and had horrible chest pain. Finially I went to the emergency room where they did some tests and told me that my gall bladder had stopped functioning. Soon thereafter I had surgery and had it removed. Before the surgery my doctor told me I had to start eating wheat again because I was losing too much weight. ( I had lost 20 lbs. Down to 108) So I did. And to my surprise, I did not get sick. This lasted about three months. Then it started all over again. Now I have stopped consuming gluten again. But when I do get it accidently... (cross-contamination, failure to ask the right questions, etc) I get very nausous, my heart rate speeds up, I feel as if I have to breathe deeply because I'm just not getting enough oxygen. I become exhausted for the rest of the day if not a couple days... I have vomited on a few occasions. I cannot eat things that have been fried or cooked in the same oil as things that contain gluten either. I haven't been able to eat oatmeal without feeling nauseous since I was a child...Does this sound like celiac disease?I had an endoscopy before my surgery. But it came back negative for Celiac disease. However I hadn't been eating gluten for several months by then. Plus whenever I mentioned the possibility, I felt like they were just passing over the issue....  I don't know what to do, I feel like even though I'm sticking to this diet, I'm still not feeling as good as I should . Then this morning, I threw up before I had even finished my breakfast... I had Kix Cerael, half a cup of coffee and almond milk in my cerael.. No gluten right? I'm so confused. If anyone has any thoughts or ideas, I would really appreciate them!!! Thank You!!!!

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hi

 

i cant give you any medical advice coz not been here long myself. but it sounds like you have decided that the gluten free diet is for you. to have the relevant testing you would have to reintroduce gluten again and it sounds like you would have a hard time with this. you obviously have a problem with gluten and dairy but many people have other underlining food intolerances as well .really all you can do is start a food diary and write down what you ate and when and how you feel and if you were sick.

 

i know its not gonna help you much but ive given up gluten and dairy as well- my results came back negative. i think now ive got a problem with eggs or nightshade veg( tomatoes ,potatoes,peppers, aubergines) ive been putting it off but im gonna have to do a food diary...

 

as for your breakfast you may have an intolerance to the coffee- it can be quite harsh on your already inflamed stomach. or a problem with the almond nuts in your milk. the cereal i dont know of coz im in the uk but have you read the ingredients - is there any soy in it anywhere? it could even be an additive, colouring,flavouring,preservative ect. 

really your only option if you cant get to a doctor for tests is a food diary - you,ll see a pattern emerge within a few weeks.

good luck with this and i hope you feel better x  

and now im gonna listen to my own advice and get that food diary ready for in the morning lol :)

 

let us know how you get on, remember you are not alone, ask as many questions as you want, people will answer and try to help.

 

 

 

 

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hi

 

i cant give you any medical advice coz not been here long myself. but it sounds like you have decided that the gluten free diet is for you. to have the relevant testing you would have to reintroduce gluten again and it sounds like you would have a hard time with this. you obviously have a problem with gluten and dairy but many people have other underlining food intolerances as well .really all you can do is start a food diary and write down what you ate and when and how you feel and if you were sick.

 

i know its not gonna help you much but ive given up gluten and dairy as well- my results came back negative. i think now ive got a problem with eggs or nightshade veg( tomatoes ,potatoes,peppers, aubergines) ive been putting it off but im gonna have to do a food diary...

 

as for your breakfast you may have an intolerance to the coffee- it can be quite harsh on your already inflamed stomach. or a problem with the almond nuts in your milk. the cereal i dont know of coz im in the uk but have you read the ingredients - is there any soy in it anywhere? it could even be an additive, colouring,flavouring,preservative ect. 

really your only option if you cant get to a doctor for tests is a food diary - you,ll see a pattern emerge within a few weeks.

good luck with this and i hope you feel better x  

and now im gonna listen to my own advice and get that food diary ready for in the morning lol :)

 

let us know how you get on, remember you are not alone, ask as many questions as you want, people will answer and try to help.

 

 

 

 

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Thank You. Yes, I have been putting off the food dairy as well... There wasn't any soy in the cereal... I drink coffee on a semi regular basis and don't have a problem and snack on almonds.... But maybe the combination of it all was too much for me? In any case I will take your suggestion and start a food diary! Thanks for your help and support. :)

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I call it a food journal.  You should keep record of small details.  Is it cross- contamination from an home made ingredient or utensils?  Where did you eat or prepare this food?  What are some of the preservitives of this food?  Pay particular attention to the top 8 allergens.  They are more complex protein chains that earned that spot on the list.

 

Next...  There are other illnesses that can have some of the exact same symptoms of Celiac.  (I have even seen my daughter, a Celiac, have the same gluten symptoms when she was suffering from Eosinophilic Esophagitus.)

 

Now on to my Eosinophilic Esophagitus rant, er information, of food journaling.  Once an eosinophil has been activated, it can remain active (damaging normal healthy tissue) for 12 days.  So don't rule out a link to a food "trigger" from "should have been digested and out of my system from all that vomit/"D"..

 

You really need to be under the care of a doctor, ASAP.  There may come a day where the vomitting does not stop and you will have to be hospitalized for dehydration.  (trust me.  Testing is cheaper than covering a hospitalization for say 4 days of an I.V. ~ done that.  paid those bills for my daughter and that was while trying to get her diagnosed.) 

 

Your symptoms can even be from a hernia.  Nothing can fix that but surgery.

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General Mills Kix does not have a gluten free label.  It is most likely made on shared lines.  If General Mills says gluten free it should be safe but if not labeled so you should assume there are contamination issues.  This is the same for all items purchased.

 

Colleen

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I'm very much like you with some of my symptoms and frustrations.  Mine started back in August of 2012 with the trips to the ER.  Before that whenever I would eat I would always get a pain in the top of my left shoulder and always have horrible "indigestion" and feeling like I had a lump in my throat.  First trip to ER dinner was pizza, second trip dinner was spaghetti, third trip breakfast was oatmeal.   Everytime I would feel sick with a bloating, swelling pressure in my abdomen and my heart would be racing.  The last trip I made to my doctor before I finally started connected the dots I had eaten a turkey and swiss on wheat sandwich for lunch, by the time I got off work my face, neck, chest were flushed bright red and my stomach had the bloating, swollen feeling and my heart was racing.  She diagnosed me with esophageal spasm and put me on a calcium channel blocker to do double duty and treat the spasm and the rapid heart beat.  Several diagnosis I've had have been, GERD, anxiety, esophaegael spasm, and constipation.   I started doing my own research and came up with celiac disease and started putting pieces together and all my symptoms started making sense, since all of my symptoms seemed to be brought on after a meal.  On 2/04 my last trip to the doctor I presented classic dermatitis herpetiformis rash, bilateral rash on both elbows and both knees.  I was then referred to a dermatologist, but because I hated the sick feeling I also started a gluten free diet that day.  Needless to say by the time I had my appointment and my skin punch biopsy I had been gluten free for 3 weeks and of course the biopsy produced no answers because there was no IgA in the skin sample, which is what they look for in your blood and biopsy to diagnose celiac and dermatitis herpetiformis.  Today is exactly 1 month gluten free and my rash is faded by at least 50%, completely gone on my elbows and fading slowly on my knees and calf.  I am also struck with wanting a diagnosis, but with the knowledge of knowing the only way to get an accurate one is to reintroduce gluten to my diet.  I WILL NOT DO THAT!  I have lost 35lbs and feel much better on my diet.  It is frustrating spending an hour in the grocery store trying to find food, especially snack items.  Just remember fresh meat and fruits and vegetables.  My new snack is Blue Ridge Mount blue corn tortilla chips with Newman's Own Pineapple salsa.  I have also given up sugar, caffeine, fried foods, red meat, and nicotine in my initial search to eliminate causes to my symptoms.  My final elimation was the gluten and was my most successful attempt so far.  Always listen to what your body tells you and sometimes a self diagnosis is better than spending money on all these expensive tests when the only solution is eliminating gluten.  There is no treatment other than a gluten free diet for celiac.  If you go gluten free and this helps, stick with it.  I know I am.  Bless you and good luck on your journey.

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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".  
    • Lex_ I agree with Ennis_Tx. You need to take some Magnesium.  It works best as a Magnesium Citrate or Magnesium Glycinate. Magnesium Citrate are easiest to find. Take it 2/day for the first couple weeks to see how much more energy you have. Then you can take it with each meal or 2/day and one hour before bedtime if it is not convenient to take it at work. If it is working you (right form of as a Magnesium Citrate or Glycinate) you will will experience vivid dreams. And wake up with enough energy to take on the day. **** this is not medical advice but it really helped my chronic fatigue symptom's. It is good for leg cramps too also known as charley horse's. posterboy,
    • 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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