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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.

"Super Sensitive" Celiacs.....
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478 posts in this topic

Thanks for the report. If you can have it, I probably can too. I am unfortunately allergic to almonds. So cashew butter is about it. I don't know any cashew butter that I now trust to be OK, so I just do without. I might feel a little better about continuing occasionally with the sunflower butter now. I also have a soy problem, so I will try to rotate it. :)

That sounds like a good plan :)

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I'm a super sensitive celiac too. It really sucks ... I'm fairly certain I'm reacting to Bob's Red Mill oatmeal now. Of course I ate it for 4 days straight so that didn't help. <_<

I just wanted to pass on what the dietician at the support group I visited last night said regarding oatmeal. Take it for what it's worth, it may or may be true for you.

She said that even with gluten-free oats, most celiacs can only tolerate between 1/4 to 1/2 cup at a time because of the protein found in oats. That while it is safe, it's still hard for us to digest, and in her experience she has not seen celiacs able to eat more than that without difficulty.

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She said that even with gluten-free oats, most celiacs can only tolerate between 1/4 to 1/2 cup at a time because of the protein found in oats. That while it is safe, it's still hard for us to digest, and in her experience she has not seen celiacs able to eat more than that without difficulty.

That's interesting. Oats were the first thing I ever reacted to. Way back in high school I was made to eat oatmeal porridge for breakfast and would end up in the loo sometime during the morning doubled over with cramps.

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That's interesting, I could never eat oatmeal, it made me gag. I always thought it was because of the lumps, hate lumps. :lol:

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The oats went down really well. They gave me a full calm feeling in my stomach that I'm not getting from the other foods I'm eating. I'm mostly Paleo so I'm mostly eating meats, fruits and veggies.

I know I overdid it though ... I've always like the taste of oatmeal.

Good tip on the Sunbutter. I have soy issues too but forgot about it when I was eating this.

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I bought a box of Cream Hill Estates Oatmeal weeks ago and have just been afraid to try it. (I was feeling optimistic in the store, I guess!)

I used to love oatmeal, but did notice that I was in the bathroom more on the days I ate it. I keep wondering if I've healed enought to handle it......but what Liz's dietitian said makes sense to me too. I have problems with so many of the plant proteins.

I think my husband may inherit my "pure" oats :rolleyes:

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Does anyone know of a large scale study for oat tolerance? Or how the only 10% react phrase came about? Most of the studies I've read are rather small (10, 39, etc. people) and seem to have a more than 10% dropout rate due to adverse reactions. I've been wondering about this for some time and thought I would ask.

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It could be the fiber in the oats too. I have a few freinds who use oats as a laxative. Flax meal is good for this too.

I started on the oats because I wanted to make oatmeal choc chip cookies for a celiac mtg. I used Bob's choc chip cookie mix and this and it turned our really well .. be sure to add some water too. I used 6 tblsp ...

Then I just got carried away.

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I've always disliked oatmeal. I thought it was because we had to sit at the table until we ate it as kids. Nothing worse than cold, solidified oatmeal.... I DID like oatmeal cookies, though!

I tried oatmeal just once since my diagnosis. Can't do it. Oh well.

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Well, it certainly made me wonder if I reacted to the oats themselves, or if they were contaminated, as I suspected at first. At any rate, I used them all and doubt I will buy more.

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Well, it certainly made me wonder if I reacted to the oats themselves, or if they were contaminated, as I suspected at first. At any rate, I used them all and doubt I will buy more.

I read the about 5% of celiacs react to the gluten like protein in oats. I am one of them. I ate a serving of Bobs oats and was sick for a couple of months. That wouldn't be from cross contamination. Plus, Bobs wouldn't be that contaminated. That makes me unable to eat anything processed in a facility that processes oats too. And that isn't listed on the label. I have to go through the company's products to see if any of them are oat containing.

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I am new to this list and posted this morning about an accidental ingestion of gluten. I was diagnosed with Celiac Disease about 18 months ago and have since followed a very rigid gluten-free diet. On New Year's Eve I had ate aomething with gluten in it and have had D since despite monitoring my diet. After reading your posts, it seems that the accidental ingestion and severe sensitivity could have triggered something else - like sensitivity to other things like milk or soy. I appreciate anyone's opinion!

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Woodrow, have you been back to your doctor to have your Celiac blood panel monitored (since you were diagnosed)? That may help you understand if you still have gluten damage.

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Woodrow, have you been back to your doctor to have your Celiac blood panel monitored (since you were diagnosed)? That may help you understand if you still have gluten damage.

No, I haven't. Is that something that should be done on a regular basis? I am so new to this.....HELP!

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My doctor has been doing blood panels....checking nutrient levels about every 6 months. It's nice to know whether you are healing and starting to absorb nutrients.

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My doctor has been doing blood panels....checking nutrient levels about every 6 months. It's nice to know whether you are healing and starting to absorb nutrients.

I have had blood work done for other reasons since my diagnosis. I know that my iron, D and calcium levels have improved since I changed my diet. Are these some of the items that would be checked on a celiac blood panel?

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Hi Woodrow,

Glad you found us! As Laura mentioned, at this point it would be a good idea to have your antibodies checked to see how you're doing there. I had mine done at a little over a year, and again last fall. Despite my sensitivity, my numbers were all in the "normal" range and a second biopsy taken this past September--3 years after the first one was also normal.

However, because my liver enzymes were elevated (over a period of time) I had additional testing and was diagnosed with Microscopic Colitis. My doctor said that it's associated with Celiac (she actually suspected it right away given my ongoing symptoms and history) --it might be something to mention to your doctor....on the off-chance.

The Celiac Panel doesn't test for other deficiencies like iron or calcium, but your doctor can order them to be done along with the panel.

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I do wonder sometimes if it is because of the years I was ill and continued to eat gluten because no one knew what was wrong.

I think you are absolutely correct.

I also think that many of us (myself included) owe those of you who are extremely sensitive a HUGE thank-you.

If you, ravenwoodglass, and many of the others had not posted about your experiences, I would never have known enough to go gluten-free in the first place. Because of your experiences, I didn't wait for a doctor's permission, or for a "gold-standard" diagnosis. Your wisdom-by-experience allowed me to put 2 and 2 together BEFORE I suffered more than minimal damage.

And the continued health problems and multiple autoimmune disorders that plague many of you are what motivate me to STAY gluten-free. You put real-life faces on the risks associated with continued gluten ingestion.

So, for myself, and on behalf of the Newbies-to-come, THANK YOU for sharing what you have learned.

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Oats are wonderful, unless they make you sick! OK, here is some info that might help.

This is a link to a USA FDA slide show put together by Frank A. Hamilton MD NIH, about celiac. This link is to slide 24, where it starts to talk about oats a little. They refer to a "large study" by G. Gilmartin in the 1-Jan-2003 issue of Gut. Thye bascially state that oats are not a problem. I haven't read the article and it doesn't say much about it, like how many people were involved etc.

slide show

http://www.cfsan.fda.gov/~dms/gluthami/gluham1.htm

Now, in the FDA testimony about food labeling issues, there are quote from celiac center reps who have different opinons. One stated that she saw no relation to oats and patients reactions, the other rep said she had a few patients that did react to oats.

Here is the link to the testimony:

http://www.cfsan.fda.gov/~dms/glutran.html

The whole testimony is fairly long, but an interesting read.

There were 2 reps from celaic treatment centers who testified.

Pam Cureton, R.D., L.D.N., Dietician, Celiac Research Center, University of Maryland MS Cureton said no oats

Anne Lee, M.S., R.D., Celiac Disease Center, Columbia University

Ms Lee Said oats mostly ok if gluten-free oats

Quote

"MS. LEE: We have had one or two people that have not tolerated them well but it is really few. Interestingly, it was two adults. The kids that we have that are doing oats, as Pam's patient also--they are thriving; they are thriving, which is one gentleman and one female. So, it didn't seem to be a gender issue, just an individual tolerance. Again, when we introduce oats we do things, as we do with any trial type of a diet, we don't let them go gang-busters. I feel that many patients do react to oats initially if they go from a very low fiber diet, which the traditional gluten-free diet can be, very devoid of fiber, and if they add a lot of the alternate grains that are very high fiber, you can get a reaction. Anyone would get a reaction to that dramatic increase in fiber. So, we instruct them to add the oats slowly and monitor. They even do it as an alternate day until we establish the tolerance for the oats and the other grains also."

End Quote

Quote

DR KANE: (*See errata) What about the oats issue? Are they including oats or not?

MS. CURETON: They are not including it; they are asking. They are asking for permission. When they come to see us they are asking for permission. At this point we do not allow oats at our center. There are other centers that do. I basically give them that information. I tell them that we are not recommending at this time and I tell them other centers are, and they are okaying it, and what I ask them to, if they do decide to make a decision to try oats, to please let me know so we can then follow their antibody levels to make sure that they are doing it safely. So, we would just follow those patients if they choose to do that. We, again, present them with the latest and what our opinions are and just ask them to tell us if they are going to try oats and then we will follow them for their antibody levels.

End Quote

slide 1

Celiac Disease-A not so Uncommon Disorder

Frank A. Hamilton, M.D., MPH National Institutes of Health National Institute of Diabetes, Digestive and Kidney Diseases August 19, 2005

Slide 24

Oats are they Safe?

* Studies from 1970's suggested that oats were toxic in celiac disease

* Oats contain a protein-avenin

* Avenin- similar to wheat gliadin

* Both are prolamins rich in glutamine and proline, both amino acids

Slide 25

OATS

* Avenin- proportion of proline and glutmaine is very low in oats compared to gliadin in wheat

* 2004, Random. Clin Trial in

* children fed GFD vs. GFD with oats

* Hogberg Gut May 1, 2004 53(5)649-654.

Slide 26

Findings

* First large study to indicate that oats in GFD do not prevent normalization of the small bowel tissue or celiac markers.

* Other evidence supporting the safety of oats; G. Kilmartin Gut, January 1, 2003

* In celiac disease, oats are not toxic and immunogenic, Srinivasan BMJ 1996:1300-01

Oats and me get along great, is that a song? :D

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Hi Woodrow,

Glad you found us! As Laura mentioned, at this point it would be a good idea to have your antibodies checked to see how you're doing there. I had mine done at a little over a year, and again last fall. Despite my sensitivity, my numbers were all in the "normal" range and a second biopsy taken this past September--3 years after the first one was also normal.

However, because my liver enzymes were elevated (over a period of time) I had additional testing and was diagnosed with Microscopic Colitis. My doctor said that it's associated with Celiac (she actually suspected it right away given my ongoing symptoms and history) --it might be something to mention to your doctor....on the off-chance.

The Celiac Panel doesn't test for other deficiencies like iron or calcium, but your doctor can order them to be done along with the panel.

Thank you so much for your response and valuable information. I plan on calling my doctor tomorrow and also plan on being a regular viewer of this forum. In just one day of joining I have learned so much. Your support is invaluable! Thank you to all!!

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I wonder if being a super sensitive celiac makes you more susceptible to other food sensitivities?

On a side note, my GI told me that with something like celiac that causes such damage to your gut, the chance of being completely normal afterwards is slim to none. He told me is was "damaged". LOL :lol: Sometimes I wonder too about genetics, and if certain genetic coding predisposes one to be more sensitive to gluten and other substances.

This is my 1st post, I just joined this eve. Can I request my doc test for other sensitivities? soy, casein, etc.? I have been gluten-free for 13 months, allergist said...Positive for Celiac, all 5 panels??? still feel lousy.

I wrote to you because your Quote spoke to me. I'm going to use that one! B)

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Welcome!!!

As far as I know, and hopefully someone will tell me if I'm wrong, most intolerances can't be tested for. My GI told me he would test for lactose intolerance if I really wanted to know, but it sounded painful, and knowing I can't have dairy is enough for me. (Besides which, I don't think I'm lactose intolerant, so I figured it would've been negative)

I have used a lot of what I found on this site and done trial and error. I started with dairy, the most common culprit, and when that didn't quite do it either, out went the soy and corn (really, most grains). It's the same idea as with gluten, once it's gone and out of your system, eating it once will usually give a clear answer.

We'll be damaged together :lol:

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Liz, question for you. I'm already dairy and soy free and am pretty sure corn is going to be added to the list soon. What flours/bread mixes do you use?

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Welcome Shaw :)

When I realized that I had issues with other foods besides Celiac (several months into the gluten-free diet), I sought the help of an Allergist/Immunologist. He started by testing me for "classic" allergies through skin-prick. Nothing turned up positive except for dust mites and cats--no foods.

I asked about the blood test for food intolerance, and he told me that he doesn't do them since they yield a lot of false positives. He said that once you eat a food, your body makes antibodies to it. According to him, even after having this type of test, most people still end up doing an elimination diet just from the many positives.

This doctor seemed to me to have a good understanding of food-related issues. He himself is dairy-intolerant and he has a Celaic aunt.

He guided me through my elimination diet, and although it took some time, I feel that it was the most accurate way to figure out what my systen doesn't like.

I related this whole thing to my new Gastroenterologist, and she said that he was absolutely right. I feel comfortable with the opinion of these two doctors, in their own ways they helped me so much to untangle all of this and get me to a point where I have many more good days than bad.

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Liz, question for you. I'm already dairy and soy free and am pretty sure corn is going to be added to the list soon. What flours/bread mixes do you use?

Right now I'm using only almond flour (NOT BRM, I get it online from a place called Honeyville). Of course I have every other flour you can imagine in my cabinet. I still use potato starch or potato flour if I'm cooking something that has a sauce, or for the occasional breading that I do.

As for bread, I rarely have it, but I've made this one once. I used a pan that was too big, but it tasted great! So, I bought a smaller pan and I'm going to make it again this week. I'm trying to get the proportions right to make a bigger loaf.

http://www.chow.com/recipes/13579

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    • I am very interested in this too. My daughter tested negative for celiac, but has terrible primarily neurological symptoms. Because she tested positive for SIBO at the time and was having some GI symptoms, I was told it was just a Fodmap issue.  I knew better and we have been gluten free for 2 years.  Fast forward to this February. She had a SIBO recurrence that I treated at home with diet and herbal antibiotics because I couldn't get the insurance referral. She was doing great. Then stupid me brought in gluten containing chick feed for the new baby chicks we got.   Feed dust everywhere. Total mess.  Really, no GI symptoms (she was SIBO free by then)...but the neurological symptoms! my daughter couldn't walk for three days. Burning down one leg, nerve pain in the foot. Also heaviness of limbs, headache and fatigue. Better after three days. But unfortunately she had a TINY gluten exposure at that three day mark and had another severe reaction: loss of balance, loss of feeling in her back and arms, couldn't see for a few seconds, and three days of hand numbness, fatigue, concentration problems.  Well, I actually contacted Dr. Hadjivassilou by email and he confirmed that the symptoms are consistent with gluten ataxia but any testing would require a gluten challenge. Even with these exposures, antibodies would not be high enough.  His suggestion was maintain vigilance gluten free.  I just saw my daughter's GI at U of C and she really only recognizes celiac disease and neurological complications of that. But my impression is that gluten ataxia is another branch in the autoimmune side of things (with celiac and DH being the other two).   At this point, I know a diagnosis is important. But I don't know how to get there. We homeschool right now so I can give her time to heal when she is accidentally glutened, I can keep my home safe for her (ugh, that I didn't think of the chicken feed!)  But at some point, she is going to be in college, needing to take exams, and totally incapacitated because of an exposure.  And doctors state side that are worth seeing?  Who is looking at gluten ataxia in the US?
    • Caro..............monitoring only the TSH to gauge thyroid function is what endo's do who don' t do a good job of managing thyroid disease.  They should do the full panel and check the actual thyroid hormone numbers.........T3 and T4. The importance of the TSH comes second to hormone levels. In order to track how severely the thyroid is under attack, you need to track antibody levels.......not the TSH. I did not stay with endocrinologists because I found they did not do a very good job and found much greater help and results with a functional medicine MD.  You should not have a goiter if your thyroid is functioning well and your TSH is "normal".  Maybe they should do a full panel? Going gluten free can have a profound affect for the better on thyroid function and that is something that is becoming more and more accepted today.  Ask most people with Celiac and thyroid disease and they will tell you that. My thyroid never functioned well or was under control under after I discovered I had Celiac and went gluten free.  It was the only way I got my antibody numbers back down close to normal and they were around 1200 when it was diagnosed with Celiac.  I was diagnosed with Hashi's long before the Celiac diagnosis.  I am not sure Vitamin D has anything to do with thyroid antibodies but who knows?  Maybe it does have an affect for the better. It is really hard to get Vitmain D levels up, depending on where you live. Mine are going up, slowly, even after 12 years gluten-free but I live in the Northeast in the US and we don't have sun levels like they do in the South.  I take 5,000 IU daily and that is a safe level to take, believe it or not.  I get no sun on my job so the large dose it is! Having Celiac Disease should not stop you from being able to travel, especially S. America. I travel, although I do agree that some countries might be very difficult to be gluten free in. You can be a foodie and travel with Celiac so no worries on that front. You may not be able to sample from someone else's plate, unless they are eating gluten-free too but I have had awesome experiences with food when traveling so you can too!
    • I don't know what you drank or where.... so here are a few thoughts. - sure, a dive bar might have dirty glasses and serve a cocktail in a beer glass?  But a nice reminder place, with a dishwasher, should be fine.  If it's a sketchy place, Stick to wine, then it's served in wine glasses that aren't used for beer or bottled ciders in the bottle.   - ciders on tap might, just a slight chance, have an issue.  Because of beer on tap, mixed up lines, etc. - you may have a problem with alcohol - you may have issues with The  high sugar content of the drink.  I know I have similar issues if I drink serveral ciders of extra sugary brands - are you positive it was a gluten-free drink?  Not this " redds Apple" pretending to be a cider - it's beer with apple flavor.  Or one of those " gluten removed " beers?  
    • Hi Stephanie, I'm also from the UK, I've found this site more helpful than anything we have!  As already mentioned above, in my experience it could depend on what and where you were drinking. Gluten free food and drink isn't always (not usually) 100% gluten free as you may know, maybe you have become more sensitive to even a trace of gluten that is probably in gluten free food/drink. Is it possible you have a problem with corn, particularly high fructose corn syrup that is in a lot of alcoholic drinks? This was a big problem for me and the only alcoholic drinks I can tolerate are William Chase vodka and gin. I contacted the company last year and all their drinks are 100% gluten and corn free, made the old fashioned way with no additives, so maybe try their products if you like the occasional drink and see how you get on. If you drink out, not many pubs sell their products but I know Wetherspoons do and smaller wine bars may too. l was never a spirit drinker but I must say their products are absolutely lovely! Very easy on a compromised gut too considering it's alcohol. I second the suggestion on seeing a natural health practitioner. I've recently started seeing a medical herbalist, as I've got nowhere with my now many food intolerances since going gluten free last year and I've noticed a difference in my health already. 
    • Sorry for the very late reply and thanks for the replies, I didn't get a notification of any. In case anyone else comes across this and has been wondering the same as I was, I did try a vegetable broth and I did react to it in the same way as if I'd eaten the vegetables.  As for the candida, I've been using coconut oil and am seeing a medical herbalist for this and leaky gut. It's only been a few weeks but I've noticed an improvement all round.
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