MsCurious

So on Monday I had homemade chicken noodle soup for lunch and in the middle of eating it I broke out in hives all over my chest and face. No other problems and it went away within about and hour or two. Tuesday I decide to eat exactly as I had on Monday and sure enough in the middle of eating the hives came back and again went away within an hour or two. Today I ate Ramon Noodles for lunch and broke out in hives again.

So now some background. I have a appointment to have an endoscopy done next thursday as I have had a suspicion of gluten intolerance for quite some time. Being back on gluten for the last how many months has been awful, but I just feel I need to know and even if the endoscopy comes back negative I am still going back to eating gluten free.

So my question is - could I be allergic to something in the noodles? It's weird is I had a piece of whole wheat bread this morning with peanut butter for breakfast and didn't break out, but all 3 days I had white noodles in my soups so I'm thinking it had something to do with that. I don't know I'm confused. Maybe I just get different symptoms from different things? I know when I drink beer I just get a really bad headache even if it's just one beer.

Anyone else have issues with hives and gluten intolerance?

Was the soup homemade or did it have preservatives and MSG and junk in it?

It could have been a glutening but soy AND the nightshade vegetables (green peppers) will also affect me that way also. Nightshade vegetables are potatoes, tomatoes, all peppers (including Cayenne), eggplant, okra, tomatillas, pimentos, etc

Yikes! I LOVE tomatoes... That would be harder to give up than wheat for me, I think! I've never really researched "nightshades" mostly because I don't what to know if that's an issue! LOL I have enough on my plate... errrr off my plate with wheat, rye, barley, shellfish, and dairy. I'm sure there "should" be more, but for now I'm HOPING it was just something else. Thanks very much for the info though, tx... I will watch for future episodes, in case that might be a cause. Time will tell, I guess. I'm much more aware of what goes into my mouth, now than I ever have been in the past, so I should be able to figure it out eventually. I don't think I have issues with soy. I'll have to monitor and see how things go in the next few weeks. Maybe it was the green peppers!

You can use Erewhon gluten-free crispy brown rice for your treats. Rice Krispies have malt in them. They are a no-no.

Bring the cereal, fresh fruit, natural peanut or almond butter, rice cakes, gluten-free crackers or pretzels (if you tolerate soy), some Lara bars, nuts, handy cartons of rice or almond milk.

You can avoid CC if you stick to real, whole foods while at people's houses. Watch anything pre-packaged.

Good luck and have a great trip!

Thanks Irish, you're always so helpful! Where can I find Lara Bars and Erewhon? Thanks!

For the airplane or car you can make sandwiches. The airplane won't let you bring ice packs. I got little packets of pb & almond butter at whole foods. You can take them on the plane in your quart baggie. Sounds like when you get there you can get things you need. Watch out when using others cooking stuff. Foil is your friend! Don't use the toasters unless you have one of those toaster bags.

What's a toaster bag? Also, I haven't tried any gluten free breads yet... any suggestions on that? I have a Trader Joe's near me, but didn't see any. Seems like everything was all spread out in the store and I didn't have a lot of time when I was there. I did pick up some rice pasta (penne style) and made it last night... my dish was FABULOUS...nobody would have ever known. I wish I hadn't told my husband to see if he'd notice, although he knows I wouldn't use wheat pasta so, that trick wouldn't have worked anyway. But, I have to say, I was REALLY HAPPY to know I can still have pasta, and its GOOD! Now about those bags... ?

After 10 days gluten and dairy free, I am about to travel for THREE weeks... and I'm a bit anxious about it. The good part is, aside from a few days traveling by air and car, I will be with family, so I can go to the store and buy things I know are safe, and I plan to take some homemade rice krispie bars and bananas or something like that with me, so I have something along I know is safe. We will be traveling for about 12 hours, on two different days... not sure what will be safe to eat in the airports. Any helpful tips? Thanks so much!

I just remembered Rice Kripsies...aren't gluten-free... if I remember right, so I'll just use Rice Chex!

Why is it that Celiac can cause some people to have C and others to have D? Many members of my family are being tested and are asking why it is that the same condition can cause such different gut reactions. Does anybody know why or how this happens? Thanks.

I'm no doctor, but if you think about it... celiac is a systemic autoimmune disease. Systemic, meaning it can affect any part of your internal system, and it affects people differently. There could be reasons for this that science has not identified yet. It could be that people with certain genetics are more prone tummy problems, others more prone to neurological issues, others have the skin issues, and many have a variety of things. It could be that blood types make a difference, it could be that environment, or other secondary food intolerances are at play. Its really difficult to pinpoint why certain people have certain issues, and that's why research about gluten intolerance is really in its infancy. There is so much they don't know yet. That's why we all try so hard to figure out how our individual bodies react to different foods, etc. Your family members have genes from the same people, but the combinations are different, so no two people will react identically to the same things, if that makes sense.

I know one person who is gluten free because "it makes me feel better" she says. Who knows, it might. But... she isn't really gluten "free" -- she's what I call "gluten lite". She doesn't eat pasta or bread. Except when she's out somewhere like Olive Garden when she'll eat the rolls because "I can't resist." Otherwise she never checks labels for wheat flour or barley malt or any of the other things we have to keep our eyes open for. She orders the grilled seasoned chicken and doesn't worry about the seasoning, or what else has been cooked on the grill. She might pick her croutons out of the salad, or maybe not if it's "too much trouble."

Yes, it annoys me because I feel like other people might not take me as seriously if we're out together. I actually don't go out to eat with her much because of this.

Sounds to me like she's "low carb" and shouldn't call herself gluten free at all. You're right, people like that, who claim to be gluten free... and let others believe its okay if they have "some" gluten are doing celiacs/intolerants a huge injustice. It's not fun to have to juggle all the gluten obstacles out there...along with trying to make sure restaurants/bakeries etc truly ARE gluten free.. and aren't just saying that for "trendy" purposes of sales. I will look for restaurants who have actually been certified gluten-free... the ones that have sent their chefs to gluten-free school to be certified. People like your "friend" make this a more difficult battle than it should have to be... and you can tell her I said so, if you want.

Actually its been ten days now, gluten free and dairy free...and its been surprisingly much easier than I thought it would be...so far. Things have been going very well, and I feel SO MUCH better! No "D" no rumbling tummy, so much more energy, no headaches, fog feels lifted. YAY! And then Friday I had a salad for dinner... rumbling started... felt bloated... gassy... no "D"... felt really fatigued, just wanted to curl up in a ball. Saturday was worse, felt so nauseated... almost had to run to the bathroom, but managed to live through the waves of nausea, and they subsided after a couple of hours. Later in the day ... "D" ... which I have not suffered from since going gluten free (thank GOD!). Feeling a bit better this morning. Tummy has calmed down, and I don't feel "sick" ... don't feel like curling up in a ball. Starting to feel better again.

Does this sound like I got glutened? Or just ate something bad? That doesn't make sense though, because my husband ate the same things I did, and he was fine. I think the only things we ate differently were: I had green peppers (no black olives) and raspberry walnut dressing, he had no peppers, but instead black olives, and some dressing with dairy in it, and he had cheese which I did not. I read the dressing bottle,and didn't see anything that looked offensive for dairy or gluten, so I'm not sure where the contamination would have come from (although, it could have happened, since the kitchen is not gluten free yet unfortunately... we're still working on that). So any thoughts? Does that sound like a "glutened" episode? Thanks, in advance for your comments.

This is just my opinion, and I'm no medical doctor, but knowing what I have learned about genetics, and the evolution of different populations, and how they have adapted to their environments over tens of thousands of years, I know that people with those two genetic markers come from ancestors who were not exposed to wheat as a food, and do not have the physical capability to digest it. Wheat is water insoluable, and while some populations have been consuming wheat for tens of thousands of years, and have develped a tolerance to it, other populations have only recently (in the big evolutionary picture) been introduced to wheat, and do not have the capability to tolerate it. People with HLA-DQ2 and DQ8 have a difficult time with this, and do better with meats, as their ancestors were hunters and gatherers, not agrarian (farming) cultures who handle wheat better.

Given the fact that your kids have those genetics, if it were me, I'd start them on a gluten free diet for life, and it sounds like they are so small that they will just accept that as their "normal" and it won't be a difficult thing for them, compared to having to "give up" things later. I don't think wheat (aside from the fiber factor) is a very wise thing for anybody to ingest, because of all the genetic modifications that have been done to create "super gluten"... that makes bread more elastic, and binds foods nicely. That's a great advancement for the processed foods industries, but its a very BAD thing for the human digestive system.

Your kids may never develop issues with wheat, or they may suffer needlessly, but there's no law that says you have to feed them wheat, barley and rye. There are lots of alternatives out there, as I am finding. Good luck to you!

Hi everybody,

I had my endoscopy Monday, and it was pretty rough going. I figured my throat might be a little sore, but if felt like they jammed a knife down the right side and left it there. They had a tough time getting the scope going, and I remember having like "dry heaves" about 6 times and then they must have really upped the sedative because it knocked me out completely.I don't remember a thing after that. I think the doctor must have taken biopsies of my stomach and more than one in my esophagus area. Felt like I had a drill go through my insides in a few areas.... felt pretty beat up Tuesday, and had a fun time with diarrhea every hour on the hour for 6 hours. I don't know...maybe it was the sedation or something, that caused it, although I did eat wheat tuesday. Anyway, that's over and I'm starting to heal, but things are still tender.

When it was over, the doctor went out to the waiting room and told my husband (first thing out of his mouth) "she can't have ANY dairy, EVER.. for the rest of her life." I didn't find this out until we were out in the car on the way home, but after I was out of recovery, the doctor came and told me the very same thing. I tried to get him to tell me if he found anything, but about all he would say was "the procedure went well, and I'll let you know when the lab reports come back." He finally did say there was a lot of inflammation, but that's all he would say, so I don't know if he didn't see anything else, or if he just didn't want to say anything until he sees the lab results, before telling me for sure what's going on.

Then today I got an email from him that said, "you can start a wheat free, gluten free diet, and DO NOT eat any dairy/lactose. The lab tests will be in next week, and I'll call you with the results." So basically I'm still waiting, again... but at least I have the green light from the doctor to go gluten free now. Do you think he would tell me to go gluten free...if there wasn't some indication that it was necessary?

I'm looking forward to feeling better, but honestly... its a bit overwhelming. Things I assumed were okay... I went to make for dinner tonight and every single thing had either gluten or dairy in it in some form... except for the hummus and corn chips...so that was dinner tonight. Not very healthy, but at least no gluten or dairy. I'm going to attempt to do some grocery shopping tomorrow so I have a few things in the house. If anybody has suggestions for gluten free dairy free cookbooks or recipe sites... I'd be most grateful for the information. Thanks!

Good news! My follow-up with my doctor went well. My biopsy was positive, and he was able to show me that my villi were blunted. He tested my thyroid, as well, and luckily it's normal. I got a lot of my questions answered about my lactose intolerance, and he seemed pleased with how I've been following the diet so far. Going back in three months to get my blood tests re-checked - my levels were pretty high (tTG was greater than 300 - yikes!), so here's hoping they go down soon!

That is GREAT news JessicaNYC! Congrats on getting things going in the right direction. It sounds like you're adjusting really well, and have a great outlook on things. I think that is half the battle. Great to hear success stories like yours. Glad you're doing better!

I got the results this morning. Celiac panel was totally negative. The doctor says he thinks I just have severe gluten intolerance and admitted he was surprised I wasn't positive for Celiac. He also said I absolutely don't have IBS... that it was a lazy diagnosis from previous doctors. He's putting me on Miralax to help regulate me and he still wants to do a Hida Scan, and possibly an endoscopy if things don't improve in the next month of being gluten-free.

Frustrated because yet again, I have all these symptoms and don't seem to have a concrete diagnosis.

He also says that even though I'm not lactose intolerant- I'm 'lactose-sensitive' and should avoid it until I give my body some time to recover from being glutened.

Anybody else had similar experiences to this???

Hi Jen, Yeah, I'm sure there are a LOT of people who have had similar experiences. I suppose I could be considered one of them. I would ask you, what tests you had done, and what the results were, because there are so many false negatives. In my case, they did tTG first, and they told me the results were negative. My gene test came back the highest risk gene possible, and when they did my EMA test... they didn't really DO it. They drew the blood for it, but the lab never did the test, yet they told me it was negative. I did NOT find out the the truth until I went to the clinic and got copies of the actual lab reports. My tTG was NOT negative, it was borderline, and I found out the EMA was never completed.

The reason I am telling you all this is, that I have TONS of symptoms, and I very well could be NCGS/I (non-celiac gluten sensitive/intolerant) HOWEVER, I may very well have celiac disease. I had the biopsy done two days ago, and have to wait two weeks for results, but at least (if the lab knows what they are doing) I will have a definitive answer. Because of my symptoms, and response to gluten-free diet, I am at the very least NCGS/I, but at least I will know if I have celiac disease or not. I would encourage you to get copies of the lab tests and see them for yourself. If you don't understand something on the test, ask your doctor to explain it. If that doesn't work, there are people here on the forums that can give you some thoughts on the results.

Good luck to you...hope you feel better soon, and hope you get answers.

I have received my son's celiac gene test results. They are as follows:

HLA-DQA1*05 POSITIVE

HLA-DQB1*02 Negative

HLA-DQB1*0302 Negative.

Does this mean he definitely cannot have celiac disease, or does the presence of the positive result mean there is a small chance of him having/developing celiac disease.

Thanks

Hi mielle,

According to what you've written above, it looks like your son definitely falls into the "pool of possibility" with the positive genetic marker. If he shows symptoms, he is a candidate for celiac and should be tested further. He should remain on a gluten FILLED diet until all testing is done... meaning all blood tests (serology) and biopsy if indicated. Good luck to you and hope he feels better soon!

On a side note, each parent gave him one set of genetic markers, so one parent has at least that same positive allele, however they may never have symptoms or the disease. On the other hand they could have "silent" celiac or active celiac with symptoms. . Just food for thought.

Why are the reference ranges different for different labs? My son has very infrequent bowel movements (but he's not constipated and does not experience stomach pain; just gets distended and IRRITABLE!). He eats a very healthy diet, lots of fresh vegetables, fruits, and water. I would like to rip the pediatrician's head off for always telling me all kids' gi problems are related to their diet. Anyway, deamidated gliadin igg was 7 and deamidated iga was 2. According to quest labs, this is negative. I found other labs online (pediatric children's hospital in minnesota) that says 7-10 is equivical. His HLADQ2 was positive and nothing else in bloodwork is remarkable for celiac. One family member (deceased) who claims she had celiac sprue. Our lives are already flipped upside down because our other son has severe food allergies/eosinopohilic disease so yes, it is a big deal to pull wheat if it's not the problem. Can someone please help us. How long would we have to be gluten free to notice a difference in bowel habbits and behavior issues?

My heart goes out to you as a mom, having such awful things happening to your son. I find it really interesting... what you talked about with both of your boys, as I am also DQ2 positve (DQ2.5 specifically) and I also have elevated eosinophil levels that they are still trying to figure out, along with testing for celiac disease. Don't have my results back yet, as I just had my biopsy yesterday, but it makes me wonder if those things are all tied together. (my inquisitive nature again... I should have been a medical research scientist...lol)

Anyway, about your question.... I noticed you referenced a medical lab in Minnesota and wondered if you happen to have access to Mayo Clinic if you life in MN. The reason I ask is that they do have a celiac department headed by Joseph A. Murry (practicing GI and head of the Celiac research there) and I know he has a collegue who is a pediatrician very knowledgable about Celiac. If you can get in to see them, your questions would likely be answered. Otherwise, as Sylvia said, most labs have their own reference ranges, so to compare results from a different lab would be skewed. Good luck with your search for answers. Hope your son feels better soon!

Another lifetime sugar addict who can now eat sweets in moderation. I figured that my body was craving the fastest energy it could get, since it wasn't absorbing the nutrients from the food I was eating.

Not that I'm the picture of self-denial, but I actually passed up a BUTTERFINGER today, simply because I didn't want it. Unheard of!

WOW... I hadn't thought of that! I have been a sugar addict for ever... and never could understand why... now it makes more sense. I sure hope I have the same results... less sugar craving would be wonderful! As I "study diligently" for my test on Monday... my "study materials" of choice today... rich gooey chocolatey brownies with home made chocolate butter frosting... SINFUL! I feel like tonight is "The Last Supper!" LOL

For the last 6 months in addition to my other symptoms I have been plagued with a flair up of stomach pain. The pain will last a good week or two then go away for a week then return. Its upper stomach. Hurts pretty bad. I have been tested for practically everything from head to toe including heart. I am apparently healthy. I tried all the antacids with no success. The pain clinically speaking is very similar to a stomach ulcer or severe gastritis. However, my endoscopy reported zero ulcerations and makes no mention of gastritis. I have been in the ER and medicated with morphine to reduce the pain, its that bad. Recently I noticed that when I drink cold water I get a moment of relief when the cold water hits my stomach. Also in the hospital when given a GI cocktail I noticed a 90% improvement in pain, so much in fact that the ER doctor prescribed my own take home GI cocktail.

When I was tested for Gluten I had already been off the Gluten for 6 months and only returned for the week prior. So my blood tests were negative. The endoscopy was done, without any biopsies or mentions of celiac. Its crazy I know but they honestly did not even think of food allergies or celiac when they tested me.

I am back to eating gluten, its been about 2 months. I am getting tested again very shortly and have a laundry list of health symptoms but the most aggressive is the stomach pain. I also get acid reflux to the point of coughing and a hoarse voice. PPI and antacids actually seemed to give me terrible headaches and made me more constipated than I already am.

Does anyone else experience this type of pain? When I was younger I would get the really bad cramping in the lower abdomen region and many times had horrible cramping right in the appendix area(tested 3 times). My pain as I get older I am 34 seems now just be focused terribly in the stomach.

Hi asickdaddy,

I'm not exactly sure what you mean by upper stomach pains. I have been having acid reflux for about the past month....that is new to me. Also, after eating (and I've been intentionally eating a LOT of gluten the past few weeks in preparation for biopsy) I feel like I have a brick in my stomach. Not a rock...but a brick, with rough edges... so it feels awful. Not sure if it has anything to do with celiac disease, or if I have some other issues going on, but that's how my tummy feels. Its very uncomfortable.

Tons of questions from me. Thanks for your patience!

In terms of symptoms, is there a difference btween the symptoms a Celiac who's ingested gluten has versus the symptoms of someone with gluten sensitivity experiences?

I don't think even the medical community can answer that one, but my "gut" response to that would be no. And the reason is that celiac disease is a systemic autoimmune disease, meaning it can and does affect different parts of the body in different people. From what I have read here on the forums, there are endless symptoms, many of which are the same among those with "official" diagnosis and those who have self diagnosed, and then those who's doctors have said, you test negative for celiac disease, but you clearly have symptoms and you respond positively to gluten-free diet so you can consider yourself gluten sensitive/intolerant.

There seem to be a couple of pretty serious issues with the lack of available information. There is no "big money" (ie: drug companies) behind the research, and when there are new findings from the limited research that is being done, this information is not making its way into the knowledge bases of the practicing physicians, so there is a huge lack of diagnosis. They have just found scientific evidence and announced in the last few weeks, that there is proof that celiac disease and gluten sensitivity/intolerance BOTH exists and are not the same thing. Both groups of people respond positively to gluten-free diet... but they dont' really know much beyond that about NCGS (non-celiac gluten sensitivity/intolerance), but research is ongoing... limited as it is.

We have a mixed kitchen in our house, and I'm the only one who is gluten-free. I spent a weekend basically cleaning out the entire kitchen of things I knew we wouldn't use anymore: gluten-filled marinades, flours, etc. Anything that has gluten that the kids or DH eat or use are on the lower shelves and my gluten-free stuff is on upper shelves. I was sure to wipe down all the cabinet & refrigerator shelves to make sure my food wouldn't get contaminated. I'm not able to completely separate everything, but ideally, I'd like DH and the kids have their own shelves or cupboard separate from my own.

I don't really use condiments anymore or even butter or margarine (no bread to put it on), so I just automatically assume they are contaminated and don't use them for any of my stuff. I did open one jar for a dinner and I put tape on it that says, "gluten-free" so DH knows not to use it and I know it's safe. We have separate butter dishes and will have separate condiments if I ever decide to use them again.

Currently, I've been sticking to mostly whole fresh foods that are naturally gluten-free. I'm trying to keep processed foods to a bare minimum. My cabinets are FILLED to the brim with dessert and bread mixes that my friends gave to me, so I always have something to make when I get desperate for something more "comforting." It's nice to know they are there when I'm having a weak moment.

Sorry I don't have more. We're still learning because I've only been on the diet for 1 month today. Best of luck!

Suzanna, thank you so much for your reply! It helps to hear how others are working through the changes! It gives me ideas, and little red flags to think about as I start this process. It seems pretty overwhelming right now... but I'm sure I'll adjust and it will get easier, but right now I feel just a wee bit panicky!

Welcome to the forum! I totally agree with what mushroom said.

For what it's worth, I was really bummed that my tTG was 10 in Jan. after being gluten-free for nine months (over 8 is positive on Quest Diagnostics lab test). That was the first follow-up test I had done. My IGG and EMA positive on my celiac panel are now negative. On my original celiac panel, my tTG was over 100. I should say that I live alone and have a gluten-free kitchen. I am so careful but was concerned that I was getting hidden levels of gluten in gluten-free foods. I was expecting a total negative on all tests. I cook a lot, don't eat out, etc.

My GI doc explained to me that we really don't know what that original tTG number really was...could have been 350 or even 1,000 since the lab testing only said over 100. He thinks I'm doing great. Kinda put my mind at ease and wants me retested before I go back for a yearly follow-up. I've also read that it can take a year or two to heal. While I've made a lot of progress, I still have a ways to go. And perhaps because I am older, that makes a difference.

At three months I was still having a lot of issues but I have no idea what my test results would have looked like at that time. I do hope you can pinpoint what might possibly be preventing your antibody levels from going down although I don't really know what should be expected at only the 3-month mark. Good luck!

ETA: Just curious...how do you feel now compared to when you had your celiac panel and EGD done?

Hey Sylvia,

I just had a thought after reading that your test results were higher than you'd hoped they would be. Its just a stab in the dark, but I remembered you commenting on the Centrum vitamin post, that even though they can't say they are gluten free, you were still taking them. This could be your culprit, if you're taking them on a daily basis. Just a thought. Hope you can figure out what's CCing you, and that ya feel better!

Actually that's a typical CYA statement and true for many products we use all the time. So I'll continue to take my Centrum Silver. I know we take chances buying a lot of things and this is just one of them...we each have to make that decision every day.

Hey Sylvia, I just had a thought. I read your post about your antibodies being higher than you had hoped. Maybe the Centrum taken daily is your culprit!?

Is there a forums topic for "How to go gluten free" for newbies? And info about CC? I've read bits and pieces about these topics here and there, but I'm hoping there is a main source for this valuable info all in one place. Wishful thinkin? LOL Please direct me to a good thread if you can... thanks in advance! The count down is on... I have to get this done this weekend.

Hi all!

My endoscopy biopsy results were negative - no celiac. A big part of me is relieved. However, I know there are false negatives so am being cautious. My GI doc was somewhat surprised he didn't find celiac (just gastritis which is common) in the 4 samples he took. However, he actually referenced the article that was in the GI Journal that has gotten a bit of press on this forum: the one where they confirm the presence of nonceliac related gluten intolerance. He thought that fit me.

I am going to go gluten-free for a few reasons

1. Too many false negatives

2. Feel like crap after eating gluten so will just listen to my body and avoid it (along with dairy which apparently my body no longer likes!)

3. I have Hashimotos and a history of graves, as far as I'm concerned, eating gluten is like playing with fire...def not worth it!

4.Trying to get my hashi's under control and my other doc recommended that the first thing i do is cut out gluten (interestingly enough, he advised me NOT to go the the GI/do the biopsy bc he thinks they're over-rated and a waste of money)

5. Seems like there is some evidence to suggest Gluten intolerance can lead to celiac and I would like to avoid the complications that can come from being celiac

My thyroid results are back but the doc hasn't spoken to me yet

Nuttmegs, Happy that you have the testing behind you, and that you don't have celiac disease. I (like you) would be VERY skeptical that gluten isn't tied to your other issues. Thyroid issues seem to be very tied to all this stuff... and I think you're VERY wise to go gluten free... I would!

I have my biopsy on Monday, along with thyroid testing... and I'm very interested in how your testing comes out and how you do along the way of getting better. I hope you feel much better real soon! Keep us posted on what your doctor explains to you.

Okay, since there haven't been any posts to the contrary, I am going with..... he is fine. Right?

It looks like he's fine, but I'm not a doctor. Just ask your doc to confirm that he's a-okay. Another thing you can do, just for peace of mind, is do the genetic test. Less (just about zero) chance of him ever having celiac, if he's out of the genetic pool. He may develop gluten sensitivity, but at least you wouldn't have to worry about the celiac part so much.

I personally don't think that celiac or gluten intolerance is a factor in deciding your diet. Because we don't know what gluten intolerance does, gluten intolerants should be just as careful as celiacs IMHO. There is just not enough known except that it is evil for a lot of people.

I agree, Mushroom... if you have bad reaction to gluten, its toxic to you, whether the medical community has a "name" for it, and a test for the damage or not. If it does nasty things to you, chances are its not doing pretty things to your insides. Celiac positive people are fortunate in that they DO have an idea what happens to them when they eat gluten, but who knows about the intolerant/sensitive people without a medical name?

I would say, if it makes you sick, stay away from it 100%! Doctors will tell you if you're celiac positive, being 99% gluten free is NOT ENOUGH. I believe that is true for anyone who reacts badly to gluten. That's just my two cents.

Do a genetic test.

I have a friend whose doctor had them do this with their child, and it literally almost killed her. Her immune system bottomed out so severely they had to keep her away from everyone for weeks, because the doctors were worried that if she caught anything at all, she might not survive.

This is actually kind of a good option, if you had positive IgG I think you said? The genetic test would do one of two things, it would confirm that you have the "typical" genetic markers that are related to celiac, pretty much giving you a positive diagnosis along with the positive serology and how you're reacting to the challenge, or it would tell you you're out of the pool for celiac, but since you are reacting to the gluten challenge, you have a gluten sensitivity, so you need to stay away from it. Maybe you could talk to your doctor about that.

T.H., that is just horrible beyond words, what that little child had to endure. I hope she is doing okay now!