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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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I'm just wondering how many of you, who have had a positive blood test, or endoscopy have/had high eosinophils?

I know it can mean other things but I thought it'd be interesting to see how many have high eosinophils

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My daughter has Eosinophilic Esophagitus and Celiac. There is a connection between the two (recently reported ?JAMA? October 2011).

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I've been diagnosed with Celiac and EE too. From what I read, it's more common in boys than girls. In a first attempt to solve the EE, I tried swallowing Flovent for 12 weeks and had some success with it but the symptoms came back almost immediately after stopping the med. But, I'd rather not take a med if I don't have to.

EE is essentially an allergy so I opted to try to find the trigger. I kept a food journal for most of the year so far to determine the trigger for my EE. I was somewhat stumbled onto the trigger - Rice! I read excerpts of several books on food allergies to help come to this conclusion, along with the food journal.

Having celiac and avoiding rice is a real pain but I haven't had any problems since I stopped eating rice and products with rice in them.

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I've been diagnosed with Celiac and EE too. From what I read, it's more common in boys than girls. In a first attempt to solve the EE, I tried swallowing Flovent for 12 weeks and had some success with it but the symptoms came back almost immediately after stopping the med. But, I'd rather not take a med if I don't have to.

EE is essentially an allergy so I opted to try to find the trigger. I kept a food journal for most of the year so far to determine the trigger for my EE. I was somewhat stumbled onto the trigger - Rice! I read excerpts of several books on food allergies to help come to this conclusion, along with the food journal.

Having celiac and avoiding rice is a real pain but I haven't had any problems since I stopped eating rice and products with rice in them.

really? glad you figured it out! btw, do you happen to remember how high your eosinophils were?

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Well I have a GIRL with EoE. She will be 12 this month. Her eos count was 46 and she has absolutely ZERO symptoms. But then again she doesn't have any for celiac either. We go back in one week from today to have her 6 month celiac check and then we will decide what to do with the EoE. I have been avoiding all the foods she tested pos. on skin for in addition to gluten. We swallowed Flovent for 8 weeks and quit due to horrible side effects (emotionally crying for hours) This has been interesting because she tested positive to "rice" on skin but the allergist and two different GI docs told me to go ahead and let her have rice. They didn't think it was causing it and it is so hard to be newly gluten free without rice products. So I have been giving her rice. Now you have me wondering! Not to hijack the celiac board but would you scope her if she has no symptoms still????

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Momof2Boyz:

Sorry, I don't have the eosinophil count. I need to request a copy of my records because I've had that question before. Sorry. I saw images from my scope though and it was textbook EE.

1974girl:

I didn't have any noticable symptoms of EE other than occasional food getting caught in my esophagus (dysphagia). I started with the skin test too and only had celery show up (not part of my regular diet anyway) as the only allergen. I don't know if a skin allergy and EE are the same. I hesitate to give advice and can only say that rice is what I determined after keeping a very detailed food journal for 6 months plus reading on the side. I have no way of knowing if that's the only allergy but eliminating it from my diet has certainly helped. Others with EE have problems with peas, milk, etc... I'd have to be very diligent for a couple weeks and then get scoped to know for sure. I don't know if that's worth the info I get at this time.

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I know this sounds horrible, but you were kinda lucky you got food stuck. That is a big symptom and you could keep a food diary and find out what it was. She has nothing. No stuck food, no belly pain, no vomiting, nothing. I will have to scope her every 3 months according to one doctor and the 2nd opinion doesn't want to scope unless there is symptoms. We are avoiding all beans, peas, apples, pork, mustard, bananas, cantaloupe, oats, and tree nuts. (This is in addition to gluten for celiac. She tested negative for a true wheat allergy). Anyway, be thankful for your symptom that you could figure out what it was without rescoping a zillion times!

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I know this sounds horrible, but you were kinda lucky you got food stuck. That is a big symptom and you could keep a food diary and find out what it was. She has nothing. No stuck food, no belly pain, no vomiting, nothing. I will have to scope her every 3 months according to one doctor and the 2nd opinion doesn't want to scope unless there is symptoms. We are avoiding all beans, peas, apples, pork, mustard, bananas, cantaloupe, oats, and tree nuts. (This is in addition to gluten for celiac. She tested negative for a true wheat allergy). Anyway, be thankful for your symptom that you could figure out what it was without rescoping a zillion times!

Not sure where you live but Cincinati Children's has a specialty clinic set up for Eosinophilic Disorders and I think they're one of the few that offers this. You can find out more with a quick internet search. My experience has been that GI and Allergy doctors tend to know some info about eosinophilic disorders but not a complete picture. At least I haven't found one yet although I'm not actively searching either. It's a relatively new field and might be worth seeing an expert in this new field. And I share your frustrations on what to feed your daughter. Good luck!

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    • I know-pretty dumb. I'm usually very careful. I didn't check into it. Thanks for reply. DebLee
    • LexieA, This thread might help you. You say you never have "heartburn/GERD". You can have something called Silent Reflux. It  could also be NERD. some of these links are in this thread but I will post some releavent information in this reply as well. here is a good overview of the difference in this fox news article. http://www.foxnews.com/health/2012/11/13/gerd-or-nerd-new-type-acid-reflux-doesnt-respond-to-drugs.html but if your throwing up it is probably from Bile Relfux. . . . instead of acid reflux. I actually wrote a blog post on celiac.com about these conditions. the NYTimes article called Bile Reflux a "Shadowland" in Medicine and part of the reason for the title of the post. here is the NYtimes article about some of the issues you are describing. http://www.nytimes.com/2009/06/30/health/30brod.html throwing up is actually a protective reaction. and this normally protect us from poison's or food poisioning etc. but when our biofeedack loop is broken down like having bile in the stomach instead of the small intestine . . . it can be hard to break this cycle. The green portion is probably the bile portion. It is actually very caustic as Plumbago pointed out.  this would/coul scald our insides (lower GI/Small Intestines). Normally stomach acid is neutralized by bile after it leaves the stomach . .. not while in the stomach. I wouldn't never recommend anybody do this on purpose . .. but if you are already puking your food up then simply buy a pH test kit. testing your food/chyme/puke (food outside the body) you will quickly get an idea of how acidic/basic your food chyme (digested food) is. It will almost be a pH of 4.0 or more. the paleo nurse explains this well why strong stomach acid is important to your health. http://thepaleonurse.com/the-truth-about-stomach-acid-why-low-stomach-acid-is-jeopardizing-your-health/ quoting the paleonurse. "In the infinite wisdom of the human body, the stomach was designed to produce the acid that is necessary for proper digestion of food.  When functioning properly, the parietal cells of the stomach secrete hydrochloric acid that bring the stomach pH to a range of approximately 1.5 to 3.0" if it is a higher pH than this you can benefit from taking BetaineHCL to restore your stomach acid to more natural level. . . especially if you are not already taking PPI's since a proton pump inhibitor is lowering stomach acid. .. . by their very ability to cut off almost all stomach acid production. **** this is not medical advice I only know taking powdered stomach acid (BetaineHCL capsules)  helped me. I was not barfing my meals though. . . so your experience my be different. Maybe Ennis_tx will comment because he has some of the same symptom's/issues. But if I was puking I think I would be curios to know what my pH really is? And not Assume? anything at this point. If you test your stomach pH with easy to buy pH strips you will know whether it really is high pH (low stomach acid or a little stomach acid as your describe it) or low pH (really high stomach aid) that is causing the issue's. Once you know for sure you  will know who to go about correcting it. Supplementing with BetaineHCL is fairly harmless . . .unless you have an ulcer. And you will/would probably know it instantly if you take some BetaineHCL and it feels like someone is putting out a cigarette in the middle of your stomach.  It is acid burning your sore/ulcer. thankfully eating protein/food quickly neutralizes/raises stomach acid especially when taken with a glass of water. staying hydrated with a meal also helps improve digestion so be sure to take some water/drink like a tea or juice etc. for example if you want to the BetaineHCL to work properly. Milk has the opposite effect.  If you feel a burning milk can coat the lining of your stomach helping to erase/ease the effect of strong acid. And why people who eat hot **** five alarm peppers aka known as Hot heads keep milk close by if they need to dampen the fire in their stomachs from eating too many peppers. . . . and drinking water can aggravate this practice of eating the hottest peppers you can find. I hope this is helpful. I have rambled on long enough. be sure to read the sickboy user in the medhelp thread of how he helped his GERD/bile reflux. here is medhelp link for easy reference included in the "silent reflux" thread if you haven't read it yet. https://www.medhelp.org/posts/Gastroenterology/UNCONTROLLABLE-BILE-REFLUX-PLEASE-HELP/show/738242?page=1 he was suffering for 5 years and got better so don't lose hope. It can seem very daunting but people on this board do get better. we have used different methods but people do get better. again this is not medical advice just things that have helped me. good luck on your continued journey but it is not a long way back if you know the way. 2 Corinthians (KJV) 1:3,4 3) “Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; 4) who comforteth us in all our tribulation, that we may be able to comfort them (sufferer still suffering)   which are in any trouble, by the comfort wherewith we ourselves are comforted of God.” posterboy by the grace of God,    
    • LOL sorry but really? You trust that, dominos, papa johns, and pizza hut ALL say they can not 100% guarantee their gluten-free pizza are celiac safe. THEY USE the same prep areas, same ingredient bins, same ovens and in many cases the same cutters and spoons used to spread the sauces and cut the pizza. I doubt the employees would even bother changing gloves between pizzas during rush.   Seriously if you want a gluten free pizza....gut a premade one in the freezer section from UDI, Dayia, RealGoodPizza or a crust from cappellos or califlower foods and make your own....Here please save yourself here is a list. BTW Pizza hut uses UDI crust and just tops them with their sauce etc....CCing in most cases and delivering them. Also the REAL good pizza will mail you cases of their pizzas fully made. Califlour foods and capello will mail you empty crust by the case. SO you can order them if  local stores do not carry them.


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      https://daiyafoods.com/
      http://iansnaturalfoods.com/products/gluten-free-cheesy-french-bread-pizza/
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      *^ This is the only one I buy, grain free, low carb crust, and the plant based one is great, NOTE these make a New york style flat crust, I use 15 min prebake before adding toppings to make them extra crispy
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      ^Gluten free hot pockets? YES they make them for when you need the old instant hotpocket, odd craving but I know they hit sometimes.
      CRUST MIXES Grain free
      https://www.simplemills.com/collections/all/products/almond-flour-pizza-crust-mix
      https://julianbakery.com/product/paleo-pizza-crust-mix-gluten-grain-free/
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