Looking For Experienced Minds -- Does He Or Doesn't He?

[w919oct]

My 4-year old has battled chronic constipation (he cannot have a bowel movement without medication due to large, oily, bulky stools), extended illnesses (especially in the winter), very high platelet and white blood cell counts, chronic anemia, daily episodes of severe hypoglycemia, and excessive thirst his entire life. His pediatrician always suspected his symptoms were an early appearance of some sort of autoimmune disease (both my husband and I are autoimmune), but decided to hold off on testing until his condition became more serious. His health took a dramatic turn for the worse after what supposedly was a 24-hour virus passed on to him by his older sister. After a full 3 weeks of illness and malnutrition (he lost 6 pounds and his stomach was horribly distended), the pediatrician talked to us about the possibility of Celiac. Of course, I ran home to read about the disease, and I started crying because after years of worry, I felt I finally discovered the "demon" we've been searching for all along.

He was tested for multiple diseases, which I was told would take weeks to finalize. In the interim, I put him on a gluten-free diet, AND ALMOST INSTANTLY, his condition improved. For the first time in his life, he had a bowel movement without medication, grew a centimeter in a week, and a greatly improved appetite. Additionally, the hypoglycemia attacks and excessive thirst disappeared. I was POSITIVE his bloodwork would clearly indicate Celiac, but it did not. Therefore, we stopped the diet, and as we suspected, his old symptoms reappeared. We were referred to a gastroenterologist for additional testing, including an endoscopy, and alas, those turned out negative as well (except for some minor abnomalities in the folds of his intestine). The gastroenterologist suggested that we keep my son on a gluten free diet because, even though the testing did not indicate Celiac, his obvious improvement with the new diet does prove a gluten allergy that he may eventually grow out of. Therefore, he's back on the diet for two weeks, has grown another 1/2 inch, is having unmedicated bowel movements, and just looks and feels absolutely fantastic.

After reading ALL OF THE VALUABLE INFO ON THIS WEBSITE, I don't believe his symptoms represent an allergy, rather full-blown Celiac, although all of his tests are negative. Is that possible? He definitely cannot digest gluten, so is he only gluten-intolerant or IS GLUTEN INTOLERANCE AND CELIAC THE SAME THING? Is it possible that this disease appears before an increase in antibodies and/or damage to his villi actually occurs?

Does anyone else have a story similar to mine where symptom improvement is your only indication of Celiac?

[Guhlia]

The Celiac tests are highly innacurate in children, especially a child that young. Yes, there is a difference between Celiac, gluten intolerance, and gluten allergy. However, it is very possible that your child has Celiac. What do you, as a mother, feel is the right answer? I would trust your instincts on this one.

[happygirl]

Yes, technically, they are different. However, treatment is the same for them all: a gluten free diet.

There are many on this board who don't have official Celiac diagnoses. Its great that your doctor said that since removing gluten from his diet helps, he should stick with it.

I would call what he has gluten intolerance. It may be Celiac, but seriously, it won't affect his treatment.

The goal is for his symptoms to improve and his health to improve. Seems like you found your answer to me!!!!!

[debmom]

Your experience with your child sounds very much like ours with our daughter. We were told that her tests looked good, and that she had severe gastritis, but not celiac, and yet her terrible symptoms resolved on the diet and returned when she inadvertently got gluten one evening. On the diet, she has seen most of her symptoms disappear.

[Worriedtodeath]

HI!

No answers here but we are in the same boat just with a much younger child. She gets her biopsy next month at 19 months of age and has had problems since 12 months of age. Negative blood work. Ped feels due to her age that the biospy will not be positive but that doesn't rule out Celiac. Just means she hasn't been sick long enough or severe enough to have full blown damaged villi. Celiac is the end of the disease.

We thought food allergies and took her back to the diet that gave her no problem(fruit/veggies/plain meat) and waited for signs of improvement and renewed health before starting food trials. When we hit wheat, the problems kicked back in. The drs all agree if the biopsy doesn't show Celiac, she will still need to be on a gluten free diet. The diet has proved she either has Celiac or will develop it if she continues. And they all agree feeding her gluten until she develops Celiac is stupid and life threatening.

Don't know if this is the right way to say it but I think perhaps Celiac is where heart disease used to be 30 years ago. You know - Well, everyone in your family has died of heart failure, so you probably will too. When you have a heart attack, we will do what we can. Now they know to give you cholesterol drugs, diet, exercise, statin drugs etc to PREVENT that heart attack that looms in your future due to your genes.

This road we are on sounds the same to me. Some drs are on the regular bandwagon saying Hey, your labs are negative and your biospy negative for Celiac so keep on eating wheat, you will be fine even though you can't eat wheat without issues. Other drs are saying hey your labs are negative and your biopsy but if you stay on this path that will change one day, so lets do what we can now to prevent that. 30 years from now there will be a whole new host of gluten sensitive levels with Celiac being the worst. (just my very newbie thoughts!! )

Stacie - who's very new to this whole thing and may be mom to three Celiac kids. We're getting the others tested to see.

[Worriedtodeath]

After reading ALL OF THE VALUABLE INFO ON THIS WEBSITE, I don't believe his symptoms represent an allergy, rather full-blown Celiac, although all of his tests are negative. Is that possible? He definitely cannot digest gluten, so is he only gluten-intolerant or IS GLUTEN INTOLERANCE AND CELIAC THE SAME THING? Is it possible that this disease appears before an increase in antibodies and/or damage to his villi actually occurs?

Forgot to say concerning your question - Our ped gi stated the diet trials alone convinced him my daughter has full blown Celiac even if she never gets a positive biopsy. He felt that many kids have all the signs and symptoms before the damage occurs enough to get a positive. The disease is patchy, the small intenstine 22 feet and he's only testing a few good size dots. IF we fed her gluten for another year, she would probably be sick enough then to get a positive biopsy. But he wouldn't think twice about pulling her off of gluten.

I wonder if gluten intolerance is the stepping stone to Celiac or if that biopsy is not as "gold standard" as they claim. It doesn't sound very accurate to me.

Stacie

[Owen'sMom]

We have the same thing with my 2.5yr old son. He was on gluten again for 8 months and had the bloodwork and biopsy done and both came back negative. He was very sick last summer and we decided to go gluten free and saw huge improvements.

We took him to a pediatric GI in January and they told us they wouldn't test unless he was eating gluten again, so we put him back on a regular diet. And his symptoms came slowly back again.

Now he has been gluten free again for a months and his symptoms have already improved a lot, he still has issues with fresh fruits though, they come out undigested within 1-2hrs after eating them.

His symptoms were loose stools and constipation, rashes, belly aches, eczema, irritability, poor sleep, poor growth/weight gain.

The GI specialist in DC just told us he has IBS and it will go away. His explanation why he does better gluten free is that it has more fiber. Which I don't agree with though as any small amount of gluten will cause him to have loose mucousy stools again.

My husbands aunt has celiac and she fully supports us that we have Owen on a gluten free diet. We are convinced that he has celiac just by the symptoms and the improvement we have seen and just keep him gluten free.

We had him tested through enterolab for gluten sensitivity and casein and both came back positive. We are now awaiting results on the soy sensitivity and the gene testing.

Regardless of what doctors say, I know my child best and help him the best I can.

[Izak's Mom]

Does anyone else have a story similar to mine where symptom improvement is your only indication of Celiac?

Yes - my son, who's now almost 2 1/2 (birthday in July) has been on a gluten free diet since he was 9 years old. His symptoms were chronic liquid explosive diarrhea and a red raised rash on his abdomen. The short story is that, 'technically' speaking, I have no 'official' diagnosis - other than the indisputable fact that when he's off gluten, he's healthy and has normal poop. And if he has gluten - even just a bite - there comes the rash and the diarrhea. We did a genetic (blood) test back when we first started and discovered he had one of the main genes for celiac, but otherwise I'm holding off testing until he's old enough for it to be more reliable - and even then, I'm not sure I would do the colon biopsy because my personal feeling is, if the results from the diet are so clear, why do I need anything else? So like many of the other posters have said, go with your gut feeling and know that regardless of what the 'official' label for his symptoms might be (intolerance vs celiac), the improvement from the diet will be the same either way. Good luck!

[Fiddle-Faddle]

It's very likely that at least some (if not most) cases of gluten intolerance are actually early-stage celiac.

Celiac is defined by villi damage to the small intestine. It takes TIME to damage the small intestine. Also, endoscopies, especially in a young child, are hit-and-miss at best. Villi damage even in adults is often patchy and not visible without a microscope. So the chances of biopsying an affected patch of villi in someone with definite celiac is NOT a given! And, as mentioned above, bloodwork has a very high false negative rate in young children.

I don't think it matters if you call it celiac, gluten intolerance, or Mickey Mouse Disease--the treatment is the same! The only difference is, if you call it celiac, insurance companies have been known to deny insurance based on that diagnosis. So it might be worthwhile NOT to have that diagnosis in the medical record.

You might also want to do a lot of research on vaccines, as there is some indication (anecdotal evidence AND studies) that vaccines + celiac symptoms= high chance of autism.

I'm not suggesting that you never vaccinate your child for anything ever again--but I WOULD suggest holding off on them until your baby's health is perfect, and even then, only getting one vaccine at a time, with several months in between.

Many here have had really bad reactions to the flu shot--which contains thimerosal, a mercury-containing preservative also linked with autism. If you feel you must get your child a flu shot, please only consider the thimerosal-free one, which is more expensive, and must be pre-ordered.

You can find a lot of good info at www.nvic.org.

[w919oct]

WOW! THANK YOU ALL SO MUCH FOR SHARING YOUR EXPERIENCES!!! As many of you have indicated, I feel the pediatric gastro community is test-happy, and like many other medical specialties, has stopped practicing patient-focused medicine, relying more on tests than real symptoms. When did doctors actually stop LISTENING to us???

My gut feeling is that he has full-blown Celiac that we caught early for two reasons -- because I am positive he is suffering from an autoimmune disease, as both my husband and I have autoimmune diseases that weren't discovered until our 20s. Additionally, his blood count has NEVER been normal since his birth. He is severely anemic and has high platelet and white blood cell counts. No one has been able to give us a good explanation why that is, stating only that "he must be fighting an illness." The true test of my theory will be proven in three months when we repeat his bloodwork.

My own assumption is that gluten-intolerance vs. Celiac is the same analogy as hypothyroidism vs. Hashimotos Thyroidits or hyperthyroidism vs. Graves Disease. One is a condition -- the other is the disease, but one will more than likely lead to the other and the treatments are the same.

Question -- I've been told that since we weren't able to confirm the disease now, we probably will never be able to because we plan to keep him on the diet, which means he will never really experience any sort of villi damage (unless, or course, he decides to add wheat back into his diet as an adult). Have you all been told the same?

[w919oct]

One other thing I forgot to mention --

My son gets a raised red rash on his abdomen and his cheeks after eating gluten as well. Once he went off gluten, we noticed that the abdomen rash went away, buy the facial rash did not. Sure enough, we checked his shampoo bottle and -- YOU GUESSED IT -- it contains wheat!

[Fiddle-Faddle]

W

Question -- I've been told that since we weren't able to confirm the disease now, we probably will never be able to because we plan to keep him on the diet, which means he will never really experience any sort of villi damage (unless, or course, he decides to add wheat back into his diet as an adult). Have you all been told the same?

Yeah, that's pretty much what I have heard.

The way I see it, if someone with celiac disease doesn't eat gluten, they do not have a disease (assuming all their symptoms clear up), they are then perfectly healthy.

Just like, if you don't eat rat poison, you won't become violently ill.

It's like the old joke: "Doctor, it hurts when I do this!" "Well, then, don't do it!"

Back to your question, since nobody needs gluten in their diet for nutritional reasons, I don't think you are making a mistake at all by keeping him off gluten. If anything, you are saving his life by protecting him from what is obviously causing him harm.

[w919oct]

The way I see it, if someone with celiac disease doesn't eat gluten, they do not have a disease (assuming all their symptoms clear up), they are then perfectly healthy.

I'm not sure I buy that. As a lifelong sufferer of an autoimmune disease myself, I was told I ALWAYS had the disease even if I wasn't experiencing any symptoms. In my case, I was diagnosed with severe hypothyroidism (a condition) in my 20s, and eventually, the hypothyroidism was linked to Hashimotos Thyroiditis (an autoimmune disease). Once I went on medication, my symptoms disappeared, and were kept in check under the watchful eye of an endocrinologist for 11 years. Then, last year for whatever reason, all of my symptoms suddenly reappeared and, to make a long story short, it was decided that a thyroidectomy was my best option. I was told even though I no longer have a thyroid and my symptoms have virtually disappeared, I STILL HAVE THE DISEASE. It seems like the doctors are using the exact opposite scenario for Celiac.

It is my understanding that an autoimmune disease NEVER goes away -- Fibromyalgia, Lupus, Rheumatoid Arthritis, Graves Disease, and Hashimotos -- are all lifetime conditions and can flare up despite treatment of symptoms. Why is Celiac any different?

This whole situation is so puzzling to me that my husband and I are considering a visit to the reknown Celiac centers at Columbia University in NY or Children's Hospital Philadelphia to learn more about this condition. With regard to Celiac, it seems we Americans lag far behind our cohorts in Europe.

[Krystens mummy]

Yes - my son, who's now almost 2 1/2 (birthday in July) has been on a gluten free diet since he was 9 years old. His symptoms were chronic liquid explosive diarrhea and a red raised rash on his abdomen. The short story is that, 'technically' speaking, I have no 'official' diagnosis - other than the indisputable fact that when he's off gluten, he's healthy and has normal poop. And if he has gluten - even just a bite - there comes the rash and the diarrhea. We did a genetic (blood) test back when we first started and discovered he had one of the main genes for celiac, but otherwise I'm holding off testing until he's old enough for it to be more reliable - and even then, I'm not sure I would do the colon biopsy because my personal feeling is, if the results from the diet are so clear, why do I need anything else? So like many of the other posters have said, go with your gut feeling and know that regardless of what the 'official' label for his symptoms might be (intolerance vs celiac), the improvement from the diet will be the same either way. Good luck!

Hi my daughter gets that red itchy rash on her body too. Can you please tell me does it look a bit like chickenpox?

[dinali63]

Just wanted to share my recent experience too......I have celiac disease that was diagnosed with blood work and biopsies. My son who's six, was diagnosed with lactose intolerance with the breath test in August. He's also soy intolerant which we figured out when we took him off dairy. I am now suspecting celiac or gluten intolerance with him, because of continued diarrhea, lack of weight gain, poor appetite, rashes. All the tests came back negative, but I'm going to cut out gluten. Today is the first day of the new diet.......I'm hopeful that we'll see results soon if the gluten is what's giving him the problems.

I'm gluten, soy and dairy free for 6 months now, and feeling great. I think as a mom we have to listen to our own gut feelings sometimes and do what we think will help our children, despite the medical advice we get.

[Fiddle-Faddle]

It is my understanding that an autoimmune disease NEVER goes away -- Fibromyalgia, Lupus, Rheumatoid Arthritis, Graves Disease, and Hashimotos -- are all lifetime conditions and can flare up despite treatment of symptoms. Why is Celiac any different?

You make a lot of good points, and you're right, it IS puzzling!

My understanding from the posts on this board is that all of the conditions you mention are in most if not all cases initially triggered by celiac.

Ever since going off of gluten, my TSH levels have indicated that my synthroid dosage needs to be reduced. It had been steadily climbing for years, and it's now half what it was 2 years ago. I'm not expecting that I will ever be able to get rid of the meds entirely (though I'd love that), but who knows? Maybe without the gluten triggering my body to attack itself--it won't! I'm hoping, anyway!

Celiac is triggered by gluten. You can't HAVE celiac disease unless you eat gluten first. Yes, I know it's a "disease," but really, it's the immune system reacting to a specific "invader" in the body--gluten.

If someone is allergic to peanuts, nobody says that they have a disease. While celiac is not an allergy, it's the same idea--something foreign in the body is causing the problem.

If someone were NEVER to consume gluten, not even as a child, they would never develop celiac. I think it's logical that they would also be a lot less likely to develop any of the autimmune disorders that you mention! I have read SO many times here and other places how symptoms of those diseases completely disappear after removing gluten (and sometimes other foods as well) from the diet.

Of course, there are other factors, too, that affect the immune system and therefore play into this whole thing, like vaccines, mercury toxicity, Lyme disease, and probably a whole bunch of other things I'm not even aware of!

[w919oct]

To the individual who asked about the itchy rash -- the rash on my son's face resembles acne (which he still has because I tested my wheat-shampoo theory last week), while the one on his torso (which is now gone since going gluten free) looked like chicken pox.

I just wanted to tell you that I had my final conversation with my gastro and both he and my pediatrician are so pleasantly shocked about my son's complete turnaround regarding his health. Because his symptoms improved so quickly since going gluten-free, that is a very strong indicator of Celiac. His onset was rapid and severe and immediately followed a 24-hour virus, indicating that his immune system is very much involved, which means they believe he does have some sort of autoimmunity. It may be Celiac, or the disease that I or his father has, or a different one. Apparently, autoimmune parents will most likely have an autoimmune child, however, their conditions may be completely different. My son's thyroid was tested, and he was normal. I was tested for Celiac, and apparently I don't have it. Perplexing!

In any case, the scary hypoglycemia attacks and weight loss are a thing of the past, and I can't think of a better Christmas present than good health. However, his energy level is so insane that I'm considering giving him a piece of bread just so I can get him down for a nap while I get some Christmas cards and wrapping done JUST KIDDING!

[Krystens mummy]

To the individual who asked about the itchy rash -- the rash on my son's face resembles acne (which he still has because I tested my wheat-shampoo theory last week), while the one on his torso (which is now gone since going gluten free) looked like chicken pox.

I just wanted to tell you that I had my final conversation with my gastro and both he and my pediatrician are so pleasantly shocked about my son's complete turnaround regarding his health. Because his symptoms improved so quickly since going gluten-free, that is a very strong indicator of Celiac. His onset was rapid and severe and immediately followed a 24-hour virus, indicating that his immune system is very much involved, which means they believe he does have some sort of autoimmunity. It may be Celiac, or the disease that I or his father has, or a different one. Apparently, autoimmune parents will most likely have an autoimmune child, however, their conditions may be completely different. My son's thyroid was tested, and he was normal. I was tested for Celiac, and apparently I don't have it. Perplexing!

In any case, the scary hypoglycemia attacks and weight loss are a thing of the past, and I can't think of a better Christmas present than good health. However, his energy level is so insane that I'm considering giving him a piece of bread just so I can get him down for a nap while I get some Christmas cards and wrapping done JUST KIDDING!

Thankyou for answering my question about the rash.

I have a 12 month old daughter who like your son has experienced some very interesting rashes. From about seven months of age my daughter has had problems with her bowels she got loose poos and was very irritable.

This was around the time we introduced little amounts of bread and teething rusks. She also devloped atopic eczema on her cheeks, was always hungry and appeared tired all of the time. After about two months of battling eczema and gut problems I noticed a chickenpox like rash on her torso. It was extremely itchy to the point that we had to give her a mild sedative to help her sleep.

Luckily we had been trying an elimination diet to try to find the cause and after jumping to the wrong conclusion (thought it was vegemite) we finally realised that the reaction only occured when we gave her gluten. We removed the gluten and now her rash is gone, she is happier, there is no eczema and she is slowly gaining weight again.

We have now taken her off of dairy because she reacts to that too. We have had a blood test that came back neg but she had been gluten free for a week and a half by then but no other tests. If people ask we say that she is celiac because people don't seem to understand why we put her on the diet without a diagnosis.

[Izak's Mom]

Hi my daughter gets that red itchy rash on her body too. Can you please tell me does it look a bit like chickenpox?

Yes - I think it looks an awful lot like chicken pox!

[w919oct]

I feel for you folks who have infants and young children, and no official diagnoses except a gut instinct. The reason my physicians were able to accept my own gut instinct is because there was a REMARKABLE decline in my son's energy level, temperment, and change in his body physique (he was once a muscular boy in the 90% percentile weight bracket -- now his legs and arms are so thin and he has fallen to the 25% percentile). There was absolutely no denying his health issues. With regards to an infant, I think a doctor would dismiss a parent's complaints of their young child's weight changes, decreasing energy level, abnormal poop, or body changes as a "growth spurt" or "poor food choices" (HOW MANY TIMES HAVE WE ALL HEARD THAT ONE!). However, my son can and actually does say to his doctor "My tummy feels better because of my special food." I think the reason I was referred to a gastro so quickly was because my son was able to communicate his own symptoms to the doctor. An infant cannot do that.

Our biggest issue right now is the PARENTS! Each time I bring along my special snacks and folks question why I'm doing so, I tell them he is gluten intolerant, and almost everyone replies "Does he really have it -- Was his biopsy positive?" What KILLS ME is that these are the same parents who are radical maniacs about their child's peanut allergies and peanut free households. I never asked them "Was your child's scratch test positive?" At what level was it? Oh, only a three, so I guess he's not that bad after all!"

My friends believe my son's diagnoses of gluten intolerance is some sort of divine curse put on me by the allergy gods because I made fun of the peanut allergy moms for years.

[pugluver31902]

Too add a little to what people were talking about the differance between an intolerance and celiac disease, its my understanding that while an intolerance can certainly make you very sick and unhealthy, it wont lead to other auto immune disease and cancer as celiac disease will. Also, an intolerance is an allergy, while celiac is a genetic issue. But thats just my understanding.

[w919oct]

Too add a little to what people were talking about the differance between an intolerance and celiac disease, its my understanding that while an intolerance can certainly make you very sick and unhealthy, it wont lead to other auto immune disease and cancer as celiac disease will. Also, an intolerance is an allergy, while celiac is a genetic issue. But thats just my understanding.

[w919oct]

That is exactly what has been SO confusing for us. My son is DEFINITELY AUTOIMMUNE because he has all the classic symptoms (unexplained fevers, extended illnesses, chronic anemia, abnormal blood counts) PLUS both parents are autoimmune (chronic hepatitis and hashimotos). My son is also definitely gluten intolerant. BUT NO ONE IS REALLY SURE WHETHER HIS GLUTEN INTOLERANCE AND AUTOIMMUNITY ARE LINKED. At this time, his gastro's professional opinion is "probably."

In any case, the gluten-free diet is definitely helping with the autoimmunity. For the very first time in his 4 year life, my son had a 24 hour virus that actually lasted 24 hours instead of the usual 96. Prolonged illnesses have been his issue from the day he was born. If this wonderful diet is the weapon to help boost his immune system, than anyone can call "it" whatever they want, as long as they don't question the fact that he actually has "it."

However, this is a very public condition, and it is getting rather confusing to explain our strange scenario to inquiring crowds, so daddy and I are just calling it Celiac, despite the fact that people "in the know" question the results of every single test we've been through. I hate that this condition is the new "hot disease" that everyone thinks they have and knows so much about. It really muddies the waters for my son and those of you who are truly suffering each and every day. A complete breakdown of your immune system when you consume a particular food is a lot different than the occassional tummy ache.

With regard to my son, we are supposed to have his bloodwork repeated in 3 months. If the anemia is gone, and all other recounts are at a normal level (which would be a first in his life), that apparently will be further evidence pointing to preliminary Celiac.

Like I said, intolerant or celiac, I don't care. I'm just ecstatic he's better

[Eriella]

Too add a little to what people were talking about the differance between an intolerance and celiac disease, its my understanding that while an intolerance can certainly make you very sick and unhealthy, it wont lead to other auto immune disease and cancer as celiac disease will. Also, an intolerance is an allergy, while celiac is a genetic issue. But thats just my understanding.

The best way it has been explained to me is that gluten intolerance is just what doctors call it because they aren't sure exactly what it is. Celiac is easy (theoretically): positive biopsy, have the gene, and positive blood work. If either of these, or both of these, are negative and gluten makes you sick, then it is complicated. It could be that you carry the gene and are in the early stages of celiac disease, it could be that you are allergic to gluten and have a different type of reactions, or it could be that you have something that the scientific community hasn't discovered yet. The exact workings may come 20+ years down the road and you want to be alive to finally understand why it works.

I am in a similar condition to your son. Every female in my family got an autoimmune disease for their 20th birthday. I starting getting sick with stomach pains and extreme constipation when I was 19, despite chugging water and coffee. Because my family is so big and so filled with autoimmune diseases, they were able to realized that the beer and pizza I was consuming at finals made me the same kind of sick as my great aunt who had celiac. My tests are negative and I am officially gluten intolerant, but if it looks like a duck and walks like a duck...

[Fiddle-Faddle]

Too add a little to what people were talking about the differance between an intolerance and celiac disease, its my understanding that while an intolerance can certainly make you very sick and unhealthy, it wont lead to other auto immune disease and cancer as celiac disease will. Also, an intolerance is an allergy, while celiac is a genetic issue. But thats just my understanding.

Hi, pugluver (LOVE the name!! )

Gluten intolerance is not an allergy. People who are gluten intolerant actually do have the same response (i.e., NOT a histimine response) as people who are celiac, and, unless they have a separate wheat allergy, will have negative allergy tests. The only official difference at this time is the villi damage.

If celiac is officially diagnosed by damaged intestinal villi, then what do you call it when all the symptoms are present and the villi are on their way to being damaged, but the damage is either not yet present or else not UNIFORMLY present (i.e., patchy, and therefore possible to miss)?

That is what the doctors have been calling, "gluten intolerance." In that type of scenario, gluten intolerance is just early-stage celiac.

If somebody gets mild symptoms from eating peanuts, they are considered allergic to peanuts. Nobody says, "Oh, let's wait until they have a full-blown anaphylactic reaction before we call it an allergy, and until then, it's just an intolerance." I think it ought to be similar to gluten: if you react, you react!

Gluten intolerance can and does lead to other autoimmune disorders and cancer, because celiac IS a form of gluten intolerance. Just look at the huge numbers of people who have all the symptoms of celiac (but no positive biopsy, therefore no "official" diagnosis") AND diabetes, autoimmune thyroid disease, RA, MS, lupus, fibromyalgia, IBS, etc.

Even more compelling is the fact that DH (dermatitis herpetiformis) is also a definitive diagnosis of celiac disease--but many DH sufferers do NOT have villi damage and some don't even have intestinal symptoms. This strongly suggests that in celiac disease, the villi don't always get damaged, that the immune system can and does target anything and everything, from GI tract to thyroid to joints to pancreas to __________(fill in blank).

So, hopefully, someday, the researchers will conclude that looking for villi damage in order to conclusively diagnose celiac is ridiculous, as the immune system just might be targeting something other than villi, with gluten/celiac as the trigger.

If it walks like a duck, quacks like a duck, poops like a duck....