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jkmunchkin

Allergic To Wheat & Gluten But Not Celiac?

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I'm sure I could do some research on the internet and find the answer to this, but figured there will definately be people on here that know the answer to this.

Is it possible to be allergic (or intolerant, as we all technically are) to wheat and gluten but not be celiac?

I ask this because the other day I was downstairs in our work cafeteria and there is this one woman who works at the sandwich bar who always makes me great lettuce wraps. (actually any of them will do it, but she does it best). She sees me on line and tells everyone she is taking care of me.. changes her gloves, puts paper down, washes her knife, etc.... love her! Ok I digress. Anywhoo, as she was making my lettuce wrap the other day there were a few girls that standing in awww of my sandwich, commenting how cool it was for a good 3 minutes. Now you have to understand, that, well I work in possibly the most high maintenance company you could possibly ever find, which on one hand is good because then the people that work in the cafeteria basically don't think any request is strange no matter how bizarre it really is. But on the other hand I hate knowing that everyone else on line is standing there thinking that I'm another one of the anorexic girls in the company.

So after several minutes of the girls ooohing and ahhhing at my sandwich and commenting over and over how cool it was, I finally told them that yes she makes great lettuce wraps, but she does it for me because I'm allergic to bread. To which one responds, "so am I!!" (Ok now I felt bad for thinking they were anorexic).

So I asked if she is celiac and she said that she is allergic to wheat and gluten but she is not celiac.

Obviously I wasn't going to argue with her about it, but ummmmmmmm am I wrong in thinking, sorry sweetie but you do have celiac?

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I think you could be. You can be allergic to any protein. The difference is which cells in your body respond. There is also something called non-celiac gluten intolerance which could very well be not-yet-celiac gluten intolerance.

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Technically speaking, that's what I am. I react to gluten, but the biopsy was negative. Enterolab showed that I am having an autoimmune reaction, so did my hair mineral analysis. But, technically, you are not a celiac by definition if your biopsy was negative ... I think it's just a matter of semantics ... but unfortunately, people like that women, are probably misled into thinking that their intolernace is lesser than celiac when in fact it's probably doing as much damage. I'm gluten-free 10 months and still struggling to regain my health ...

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The reason my doctor insisted on doing and EGD was to determine if I had that type of thing. He said it is possible (but not probable) that I could react to gluten with DH but not have any intestinal damage. As it turns out, not even close to the situation but for a little while I had fun creating all kinds of ways to deal with the rash so I could eat a regular diet. Oh well, I'll just go with the blessing in disguise thing....my family and I eat MUCH healthier now and for that I'm happy.

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I'm not sure why it would matter. I agree, it seems like semantics to me.

While neither one of us are dx'd with Celiac, we both are gluten intolerant. Both issues require the exact same diet, so it really doesn't matter what it's called. (My daughter IS allergic to wheat, though!)

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Carla, how long do you think you were sick/really sick before you stopped eating gluten?

I have had stomach problems since I was a small child. I have gotten so sick I couldn't work four times (including now) -- my college roommate took me to the emergency room about 24 years ago, but no one knew what was wrong. I had little trust of doctors because they never could find out what was wrong with me. About 4 years ago I discovered on my own that I got sick if I ate wheat and cut out wheat. The book I was reading said that many food allergies go away and you can add back in that food after some time, but don't eat it often. So I added back wheat on an occassional basis and eventually got sick again. So, I was "gluten-lite" for four years when I had the blood test which was negative. I cut out gluten anyway, but didn't know all I know now about getting it 100% out of my diet. I started losing a pound per week for four months and went completely gluten-free. I then went to a GI and after hearing my story he said, "Celiac". I ate a little wheat for the next 6 weeks, got VERY sick off it, then had a negative biopsy. I went gluten-free the day of the biopsy and have been ever since. That was last December.

We then had a very difficult move where our family was separated for four months, and I think that was the last blow my adrenals could take, so now I'm trying to rebuild my health on a strict diet, rest, supplements, infrared sauna, etc. I still have some digestive issues that I think have to do with detoxing as my mineral analysis showed I was way out of balance and have some heavy metal toxicity.

That's it in a nutshell (I left some out in the interest of keeping it short). It's been a long four years, especially the last two ... today when I was at the grocery I was about ready to throw in the towel ... I thought, "I feel so bad anyway, what's the point?" But I know I'm really healing and that's what's sapping my energy right now. Doc said that just as I didn't get sick all in one day, but had cycles of good, then bad, then good again till I was bad most of the time, I would have the same thing in reverse, bad, then good, until I feel good most of the time. And, I'm finding that to be true. I'll just be happy when the good is more than the bad!

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Wow, thanks for going all through that. (I mean talking about it, not being sick for the benefit of my education :) ) I was wondering about the connection between length of being really sick and length of time to heal. I had totally forgotten about all the associated issues that also arise from Celiac and constantly damaging your body with gluten.

I felt so fabulous when I stopped eating gluten that I sort of felt like everything would be fixed. Which I knew wasn't true, but you can always hope. Now I'm wondering if other things that are now becoming evident were just masked by the intense gluten reaction.

I have been considering cutting out nightshades to see if it helps with the joint pain, but for me, that will be very very hard.

I hope the bad cycles are getting shorter and shorter.

Jeanna

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Jeanna, I think that's what happens with many of us, we have sort of a honeymoon period when we first eliminate gluten where we feel great. From what I've read, healing needs a lot of energy, so your body just doesn't do it when it can't. That's why it's common to feel really bad all of a sudden after you've just felt great. So, applying that theory to us, when we first get off gluten, we build up that energy, then we start healing other problems so start feeling bad again because the healing is taking so much energy.

The other thing I've heard associated with joint pain is legumes, including peanuts and soy.

Do you take MSM, glucosamine, chondroitin? It helped me tremendously when I used to have joint pain. At least one of my symptoms is gone!!

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I don't eat a lot of legumes or soy, although I have been scarfing down those peanut butter cookies. I was gonna try those with almond butter anyway.

I'll try the glucosamine/chondroitin. Do you remember how long it took for you to feel an effect? (Days or months?)

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Be sure to get on that also included MSM. I don't remember how quickly it helped, but it wasn't months -- either days or a couple weeks. I would start feeling pain again almost immediately when I stopped taking it, too. Now I don't need it anymore.

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Allergies are an entirely different animal from intolerances and celiac.

They produce different antibodies, for one. An allergy creates an IgE response, while celiac produces IgA, IgG (so do other things), and TTg.

I, for example, have celiac (or really likely celiac, but my dr's call me celiac so I'll go with it), BUT (and this is a big but) I'm also allergic.

I'm allergic to gluten (gliadin is the gluten in WBR) in the same way that someone else is allergic to peanuts, milk, or grass.

I'm lucky, eh?

But yes, you can be allergic to gluten without being celiac, they're different things.

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I get a little confused by a lot of this but isn't there a subtle (at least to non-medical people) but significant difference in auto-immune response and allergy response? I mean in terms of what is actually happening to you, obviously both are bad.

If there is a difference, can you have both a allergic and an auto-immune reaction to the same item?

Edit: Okay, the previous post actually answered my question. I guess I should read all of the posts in a thread before responding.

Could allergy / auto-immune combinations explain why there is such a variation in symptoms?

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I get a little confused by a lot of this but isn't there a subtle (at least to non-medical people) but significant difference in auto-immune response and allergy response? I mean in terms of what is actually happening to you, obviously both are bad.

If there is a difference, can you have both a allergic and an auto-immune reaction to the same item?

Yes, like Penguin, you can have both.

An allergy to a food is usually something more acutely dangerous because of the immediate reaction (think of kids with peanut allergies). An autoimmune reaction destroys your body over time.

So, you can be intolerant, celiac, or allergic to gluten. Intolerance and celiac are closely related.

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Yes, you can either be allergic to wheat/gluten or have an intolerance (which I consider the same as celiac, just not as advanced in the damage done to the body). These are two very different reactions in the body. Think about people with peanut allergies (I just pick this because it's so well known). These are often anaphalatic reactions. I have a peanut intolerance so I'm not going to die if I eat peanut, I just don't feel well (kindof like how I feel with gluten).

Wheat is one of the top eight allergens, too.

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I'm gluten intolerant but not celiac. In my case, I have collagenous colitis. I am negative for celiac by both blood-test and bowel biopsy (which found the colitis). There is no proof that gluten triggers this type of colitis, but when I eat gluten-free (and free of a bunch of other foods) I have no symptoms.

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I was never completely sure if I am celiac because I am very allergic to wheat, oats, and other grains. If I eat them I get asthma, hives, eczema, and gastrointestinal problems (food allergies also cause stomach pain and diarrhea). My blood test for celiac was positive, but they told me that can happen when you are allergic to wheat as well. Of course the biopsy was negative because I had been off of those foods. So, I might not ever know.

But a person can certainly be allergic to glute. The first time I ate spelt I had a terrible allergic reaction and had to go to the hospital. The proteins across those grains with gluten are so similar it can cause cross-reactivity in people with allergies.

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Guest nini

in my opinion it's semantics but my daughter is "technically" not celiac although we know that is what it is, but she is also highly allergic to wheat and oats. Me on the other hand, I'm a confirmed Celiac, so that would lead me to believe that my daughter's gluten intolerance/wheat allergy is really Celiac in early stages. We just fortunately caught it early in her because of my dx.

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I think "celiac" reactions are all over the board, everyone is different. My mom was diagnosed celiac 40 years ago. She almost died, and even today, if she ever gets even a smidgen of gluten she is guaranteed to be violently ill very quickly. It's bad enough for her that she never is even tempted to cheat. We were always told of its genetic nature, but really never suspected I might have it. As an infant I had terrible colic and couldn't drink milk. My whole life I avoided milk because we knew it would give me problems. I did have dairy on occasion, just not a lot of it. I also ate grains, sometimes more than others, but didn't draw any connection because I always thought most of my intestinal reactions were due to dairy. As I got older, there were times where I felt I couldn't eat anything at all without getting sick. Many times about an hour or two after dinner I'd get horribly nauseated and have to lay down for awhile till it passed. Sometimes it would go away after a couple of hours, other times I wouldn't feel well till the next day. There were occasions where I'd wake up in the middle of the night with horrible stomach cramps, nausea, and eventually D. I threw up here and there, but not usually. I'd just feel like I was about to. I also developed a chronic cough and an asthma like condition that doctors would never diagnose as asthma. I never connected that, either.

Finally last January I really got sick and had a very frightening dizzy spell which scared the dickens out of me. Thinking about what I had eaten the last 12 hours, I realized I had eaten a ton of grain based things. I started researching, found this site, and learned about Enterolab so I got the full testing from them. I learned I have two specific genes...the celiac one and one that is related to gluten intolerance. My tests showed antibody reactions, but interestingly, the fecal fat score was low in the normal range (that is good!). I also tested positive for casein sensitivity. Enterolab's recommendation: don't eat gluten or dairy.

So there you have it....I'm not planning to do a biopsy to get a 100% celiac diagnosis. My understanding is that gluten sensitivity even without the celiac gene can cause all the same symptoms and also do damage, to say nothing of making you feel horrible in one way or another. Eating dairy with casein sensitivity can likewise do damage according to Enterolab.

If you have symptoms, it makes sense to eliminate gluten and/or casein from your diet. If you have the celiac gene, you can be in a state of gluten sensitivity (or not) for decades, then some kind of trauma (emotional, illness, pregnancy, anything) can trigger the progression to celiac disease, which has always been defined as the presence of villi damage in the intestines. Personally, I think this is just a convenient designation of a name to that condition, which has unfortunately led the medical profession to somewhat ignore and minimize the reactions of that much larger subset of people with gluten sensitivity and active symptoms.

So what do you do? I've been mostly avoiding gluten and dairy for 10 months since my test. There's probably no way I could be diagnosed with celiac at this point anyway even if I wanted to get the biopsy done. After 10 months we went to Hawaii and I got really off base with my diet....I had some pancakes (no reaction!), and more and more cappucinos, some bread here and there, lots of yogurt and ice cream, and I had about 2-3 weeks of "normal" eating without reactions other than a tolerable, not so bad "almost" state of D and a couple of heartburn attacks, which I know are related to gluten. Then suddenly, I came down with horrible asthma type symptoms, coughing all the time, congested lungs, increased back and joint aches, and it all very quickly got bad enough that I knew I had to get back on track with a careful GFDF diet again. I don't really know if most of my returned symptoms were due to gluten, to dairy, or to both. Probably both. In only 2 days GFDF I saw a difference. I don't know what other proof I need. I don't need a doctor to tell me not to eat these things, really. It comes down to this: Do I want to eat these foods enough to live with the reactions I get, particularly the asthma ones which keep me awake at night? No, I don't. Never say never....I got off track in Hawaii. I knew better, but ate the stuff anyway. Now I have to get healed again. But it's all pretty obvious and I don't need any half-clueless doctor to confirm this.

The problem for some of us is that we can feel well enough to think it has kind of "gone away." That really doesn't happen, I guess.

I'm not sure what my point was going into all this...the topic was "allergic to wheat and gluten but not celiac." None of this is actually an allergy.....that's the thing. Huge numbers of people have gluten sensitivity and all the assorted reactions and symptoms, and a relatively small number of that group actually have diagnosed "celiac." That might be because celiac is admittedly hard to pinpoint sometimes, and not everyone gets properly tested. Probably a lot of people have it and never know it. At the very least the starting point is the symptoms....you should never ignore them.

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I just found this forum but I haven't had a chance to read much yet. My daughter is 9.5 months old and we thought she might have celiac. We just had her blood taken today so will have to wait for the results however her pediatric GI told me that she doesn't think she has celiac but a gluten intolerance. The difference isn't that clear to me BUT with an intolerance, you can grow out of it but with celiac you cannot (as you all know). My daughter has been as gluten free as possible for about a week and I have seen a dramatic difference in her already.

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She could be allergic to wheat, rye, barely, and oats. I have a wheat allergy which is separate from celiac disease, but I don't appear to be allergic to the others, which tells me that I am allergic to wheat and not gluten. It would be interesting to know if she was ever tested for celiac disease.

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