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About givingthanx

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  1. Crazy thing! read this: http://ghr.nlm.nih.gov/gene/HLA-DQB1

    I have HLA-DQB1 0501 and 06**. inhave started suspecting the 06** is an 0602 because of the problems I have. You know, they always tout DQ2 and DQ8 when they talk about celiac disease so I figured I probably had non-celiac gluten sensitivity. Well, been reading over this 0602 info available on the Internet, and it keeps saying DQB1 0602 is associated with celiac disease!!! as the info atbthe link above will tell you, an alternate name for the DQB1 0602 gene is CELIAC1!!! how crazy is that?

    I do have a lot of dizziness - orthostatic hypotension. I also have issues that appear to be related to hypertension. I've even started to look into following a diabetic diet in addition to the gluten. I have neuropathy issues as well. You might look into LADA, a strange atypical type of diabetes (usually thin people) that usually has adult onset, also associated with 0602. it appears to me, after much reading, that it is a separate type from types 1 or 2 with some similarities to both - thus sometimes called type 1.5. Serious stuff. Hard to get a diagnosis because physicians don't recognize it. But people who have it need to figure it out because it leads to complete lack of insulin production in the body. A pubmed article I read seemed to indicate that a study showed a gluten-free diet seems to delay its progression. a person with LADA will absolutely require multiple insulin shots daily once the thing has run its course.

    Good luck. I'm about to try and research some (google) on HLA-DQB1, atypical celiac disease - to see if my symptoms line up. This is all very intriguing to me.

  2. My son had very dry skin,after eliminating casein,gluten and soy,his skin became very soft.He gets the eczema patches if he gets glutened.

    What do these eczema patches that people are talking about look like? I've been getting brown patches of brown leathery skin - on my feet and on my knees. The patches have defined edges. Wrinkly, leathery, hard skin. Not itchy. My mom, who I suspect has celiac (she's got a ton of symptoms) also has these patches.

  3. I have soy sensitivity (verified by Enterolab tests 8/06). I seemed to have problems every time I ate the Nutty Flax cereal which is supposed to be gluten free. So I did an allergy blood test which included flax. I did NOT react to flax on that test.

    Then I noticed the lower side of the Nutty Flax box said "Made in a facility that also manufactures products containing soy and gluten. Strict manufacturing and sanitation practices are employed to prevent cross-contamination. This product is routinely batch-tested for gluten."

    I concluded that even though they try to prevent cross-contamination, they also batch test for the presence of gluten in that cereal. HOWEVER THEY DID NOT SAY THAT TESTED FOR SOY. SO THE CEREAL COULD HAVE SOY CROSS-CONTAMINATION. I stopped eating that cereal and my symptoms disappeared.

    If you are soy sensitive and abstain for awhile, you can react even more intensely the next time you ingest even a tiny amount from cross-contamination. Find another cereal.


    Thanks for that post, Burdee. I'll stop eating it. Too bad, because it tastes really good with agave nectar. It's definitely not worth it, though. It affected my job yesterday.

  4. Glad you didn't take it the wrong way....

    With all due respect and taking your constitution + bill of rights .. the purpose of a military is to defend the country from a clear and present danger.

    To some extent this differentiates the national guard and state militias from a "professional" army who might be required to help others out or perform police actions.

    I believe (but this is my personal viewpoint) signing up to defend your country/state in dire need is not the same as being sent around the world to perform police actions... (without geting in to the justification or not of those actions)... indeed from memory only the 12th ammendment actually applies and then only to slavery... from memory the text saying "or any territory over which we hold sway" (or similar)... No point this becoming political... I don't mean it like that...

    Regarding celiac... etc. there is a very clear difference between fighting to defend your country from someone actively trying to occupy it ... with the possible intent to kill or imprison your family and subjegate your population and performing actions elsewhere when there is no direct threat.

    To a point because it really depends on the situation....

    At the point at which your country is occupied or in the process of being occupied everything changes...

    Whereby it seems acceptable to cluster bomb civilians and follow it up with a gunship in a far away place in order to "take out" a a few possible "insurgents" and minimise losses of your own.. most people wouldn't be that happy if the target happened to be one of your own cities with your own population....

    As this hasn't actually happened to the US since the civil war... Americans tend to have a different opinion over this than countries that lost huge percentages of their civilian population during WWII.... however I really think the whole celiac issue is kinda pointless at the point where you are put in a position of defending somewhere until the last man is killed.

    The National Guard can be, and has been, called on to do all the same functions as active duty. In fact, we are being used in large numbers in the current conflict. Our base, which is solely an Air National Guard base, actually had to train additional security forces personnel because they were sent over in large numbers to the Middle East. I actually tried to volunteer for security forces (my career field is combat communications), but they had cut off funding at that point. Besides that, my unit has been deployed to the Middle East and will most likely be deployed again in the near future. Anyone who is deployed, regardless of their job classification, is prepared and trained to deal with some level of combat.

    All combat communications personnel (of which I am one), including guard members, go to a special school to train for direct combat. They give us M-16s fitted with lasers, and we do very real war games where there are well-trained aggressors with night vision and high powered scopes attacking us. A lot of these "aggressors" have had war experience. They train us to dig fox holes, about "friendly fire," how to sweep out snipers, how to keep moving because a moving target is a more difficult target. They train us in how to address various outsiders who might try to gain access to our area and when to use force and not use force, as well as how and when to detain and/or disarm aggressors. The aggressors sometimes stormed our camp, and we had to respond. We could get "killed" and "wounded" (the lasers could set off sounds that would indicate a kill or a "near miss"). Some of us were captured. They teach us how to survive on our own without supply - how to test for poison in possible foodstuffs to be found in the wild, how to treat medical situations without medical supplies.

    Besides the fact that they put so much effort and expense in training us in how to avoid bullets and be prepared to resist aggressors, my military would not be throwing me out of the military if I was only a bullet-catcher to them. But they're in process of throwing me out because of gluten sensitivity. It remains to be seen whether or not I'll actually be cast out, but I think I will be. I've at least been put on a temporary hold from any service. And that's because they don't just want a bullet-catcher. They want someone who can be highly functional and capable of repelling the enemy or supporting others who are repelling the enemy in those critical moments. They do not want dead weight. They can't afford dead weight. Dead weight bullet-catchers lose battles, which is why there are medical and psychological ceriteria which determine who can and can't be in our American military, which is quite frankly currently the premier military in the world.

    The reason we haven't dealt with much in the way of attacks on our land is because our government has largely had a policy of keeping the war off our shores. This is not a mean thing. This is a responsible policy used to protect our people. If we allowed people to take the fight here, our people would be in more danger. I don't think it's wrong for us to do what we can to keep the fight off our shores. We have a very, very efficient homeland defense - though not impermiable, for sure, it is quite effective. If it wasn't, we would have surely experienced a much greater direct loss by now.

    Where are you from, by the way? The UK?

    But I diverge from celiac disease, so I'll stop here.

  5. Hi. I'm in the Air National Guard. This is the state component of the Air Force. This past weekend, when I went in for my annual physical assessment, I was put on profile. This means that they marked me as undeployable, and therefore, unpayable. I can't serve until I get a negative diagnosis for gluten sensitivity. I have been in for 4 1/2 years.

    The doctor I went in to see was going to let me through and allow me to just talk to my commander about it and have an understanding, but on second thought, he sent me over to the doctor in the room next door because he was a pediatric GI doctor. The first doctor did acknowledge that there could be some liability for me if he allowed me to pass through. The military doesn't like it if it appears you've been trying to keep a secret.

    In all actuality, "gluten sensitivity" is not on the list of unwaiverable conditions, but celiac disease is. I'm not certain I have celiac, but I'm certain I'm gluten sensitive, so I thouht I might be able to slip past the radar. The second doctor (GI doctor) said that, for all practical purposes, they're the same. So he put me on profile.

    Now I'm supposed to go see a civilian doctor, pay for the diagnosis all myself (I have no insurance), and if I don't do this, I get kicked out. If I do pay for the diagnosis and get a positive diagnosis, I get kicked out. I don't know for sure what I'm going to do, but I'm leaning toward NOT going to see a doctor for diagnosis at this time. I have a new job, I'm in the red, and my only income is commissions only. There's a learning curve, so I'm not making anything yet. I just can't afford to (a) pay for this right now or (B) get sick and miss time on the job.

  6. By this point getting gluten-free rations isn't really an issue since your job is to go out and take a bullet anyway.

    If you don't like it don't sign.... (with apologies to anyone who through circumstance signed up for an education or the chance to get out of a dead end town)

    I certainly understand you didn't mean any harm :), but I must beg to differ about the job of a military person being to take a bullet. Our job is not to take a bullet. Our job is to do our best to avoid taking the bullet so we can take out as many of their guys as possible. That's why our government spends so much money training us and on our protective equipment.

    I do agree with your statement, "If you don't like it, don't sign."

    With that said, an update on my situation: As stated in a prior post, I'm in the Air National Guard. This is the state component of the Air Force. This past weekend, when I went in for my annual physical assessment, I was put on profile. This means that they marked me as undeployable, and therefore, unpayable. I can't serve until I get a negative diagnosis for gluten sensitivity.

    The doctor I went in to see was going to let me through and allow me to just talk to my commander about it and have an understanding, but on second thought, he sent me over to the doctor in the room next door because he was a pediatric GI doctor.

    In all actuality, "gluten sensitivity" is not on the list of unwaiverable conditions, but celiac disease is. I'm not certain I have celiac, but I'm certain I'm gluten sensitive, so I thouht I might be able to slip past the radar. This doctor said that, for all practical purposes, they're the same. So he put me on profile.

    Now I'm supposed to go see a civilian doctor, pay for the diagnosis all myself (I have no insurance), and if I don't do this, I get kicked out. If I do pay for the diagnosis and get a positive diagnosis, I get kicked out. I don't know for sure what I'm going to do, but I'm leaning toward NOT going to see a doctor for diagnosis at this time. I have a new job, and my only income is commissions only. There's a learning curve, so I'm not making anything yet. I just can't afford to (a) pay for this right now or (B) get sick and miss time on the job.

  7. This info is important to note. I could very well be exhibiting many symptoms without obvious villous atrophy...which means I likely will never get an official diagnosis, unless they develop other methods of accurate testing that focus on the triggers for the other symptoms. Dietary response will be the best test for me.


    You're right about the difficulty in getting a diagnosis! Check out this horror story I got off a glutenfreeforum profile signature off the bottom of a post:

    celiac 49 years - Misdiagnosed for 45

    Blood tested and repeatedly negative

    Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

    [which means they did an endoscopy and finally saw signs of celiac after 45 years of symptoms]

    Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias and arthritis All resoved with proper diagnosis of Celiac November 2002

    Some residual nerve damage remains as of 2006

  8. Michelle, I did a search on the red flush you get from alcohol. Weird! Most of the results came up as "Asian Flush." One person said an allergy to sulfites can cause it. Everything else talked about this genetic thing that is predominant in Asians, and possibly Jewish people. It has something to do with an enzyme that's supposed to break down something in the alcohol... if I understood it right. I just skimmed the info. I wonder if complications from celiac/gluten sensitivity can cause it by depleting the enzymes? I have no idea. Check out these links:




    A lot of your other symptoms really DO sound like gluten sensitivity. Of course, you already knew that. I really feel for you. It sounds like you really are having a tough time.

    You talked about being very flexible. Did you have late developmental markers as a kid? Did you walk late, talk late, etc? There's something called hypotonia. People who have it are super flexible. A hypotonic person can have poor spacial awareness - easily bumps into things and is poor at ball sports, etc. It's not actually a disorder in itself, but it generally indicates that there is probably a disorder that has caused it. I guess that means it's more like a symptom. It's associated with Ehlers-Danlos, like you mentioned. It's also associated with celiac. When information indicated something can be a symptom of celiac, I tend to assume it can also be a symptom of non-celiac gluten sensitivity. I'm actually a member of a hypotonia listserve because I discovered I have it.

    Have you heard of peripheral neuropathy? It sounds like what you're experiencing with the numbness in fingers and toes. Symptoms of peripheral neuropathy are highly variable, so as you look at the sites below, don't think you have to have all the symptoms to be experiencing it.



    Below is a table I got from http://jnnp.bmj.com/cgi/reprint/72/5/560.pdf

    It appears that 29 out of a group of 83 people with celiac disease had peripheral neuropathy.

    Table 1 Neurology of coeliac disease

    (based on a review of 35 papers of single or multiple case reports from 1964 to 2000)

    Total number of patients 83

    Male to female ratio 44:39

    Mean age 48

    Neurological diagnosis

    Ataxia 29

    Peripheral neuropathy 29

    Myopathy 13

    Ataxia with myoclonus 9

    Myelopathy 4

    Dementia (usually with additional features) 6

    I also got this from the same article:

    Only one third of the patients with neurological disorders associated with gluten sensitivity have villous atrophy on duodenal biopsy. Even some with biochemical markers of malabsorption such as low serum vitamin B12, low red cell folate, or vitamin D concentrations had normal conventional duodenal histology.17 These cases may illustrate the patchy nature of bowel involvement in coeliac disease and the inaccurate interpretation of duodenal biopsies by inexperienced histopathologists...There are, however, patients where the immunological disorder is primarily directed at the nervous system with little or no damage to the gut.

  9. Interesting...I didn't know that. I'll have to look into it. It certainly isn't something my doctor(s) have suggested, but they seem to be content with just saying, "but you look so healthy!" Blah. I don't feel healthy, and my symptoms certainly don't indicate healthy!

    ...I really need to get back on the gluten free diet and give it an honest shot, especially since my skin is getting worse, my moodiness is getting worse and I'm losing more hair now (including my eyebrows!) :blink:


    Hey Michelle. It certainly sounds like you've got something autoimmune going on!!!

    What other symptoms do you have? You said you don't feel healthy. Are you fatigued? I put in three of your symptoms - hyperpigmentation, hair loss, and moodiness at this site:


    And I got these possible results: Addison's Disease, Polycystic ovary syndrome

    It's always possible you have more than one condition that could complicate diagnosis. But both of those conditions, apparently, are known to cause all three of those symptoms.

    Look at the back of your neck in the mirror. Is the crease in your neck a darker color? Look at your gums. Are there dark spots on your gums?

    Check out this site on Addison's:


    What's getting worse about your skin? Also, does your hair come out in round patches, or is it thinning?

    Are you sure you're gluten sensitive? You might be. And you might have other stuff in addition. But it's possible going off gluten might not solve all of this stuff. It wouldn't hurt to try, though.

    It sounds like you need different doctors!!!! Maybe an endocrinologist would be best.

  10. It's possible that's why my skin is like that, but I am very fair and tan quite easily which I think is the more likely reason. BTW, I'm now noticing white patches here and there in my skin...starting to wonder if it is vitiligo, which is also autoimmune. So far it's a big fat negative for celiac with the testing I've done. I strongly suspect I am at least gluten intolerant, and possible casien intolerant...just not going to end up with a positive diagnosis to support it.

    I'm not so sure that celiac necessarily makes one pale. It would depend on how your body exhibits symptoms and which autoimmune issues you have. Those with DH can end up with dark spots where the lesions erupt. Those who have psoriasis will have a difference in skin colour in affected areas too.

    If you suspect you're gluten sensitive, then by all means try the diet. It's free, and it can be a very healthy way to eat.


    Hi Michelle. Vitiligo is also associated with Addison's disease.

    No, celiac doesn't necessarily make someone pale, but it is one of the common possible symptoms. I'm very pale myself.

    What do you think about EnteroLab (http://enterolab.com)? They do testing to determine if a person is gluten sensitive. I believe they can also test for casein sensitivity. I have only had their gene test because I don't have the money (yet) to do anything else.

    I am gluten free now. Going gluten-free removed some serious symptoms I'd had for a few weeks, and it also removed a couple of long-standing symptoms. A couple weeks later, not being totally sure I was gluten sensitive, I took communion at church and got sick again.

  11. Thanks for your replies, Michele.

    I'm not able to easily go to the doctor because I don't have insurance. Plus, I lost my job a couple weeks ago. So I'm doing what I can to research things myself for the time being. The only thing I know I have at this time is a gluten sensitivity.

    You mentioned that your skin is darker in scarred areas and where you've been injured and the darkness takes a long time to fade away. This seems consistent with Addison's disease, which is the adrenal insufficiency I mentioned earlier. It's also an autoimmune condition, and it occurs more often in people with celiac than in the general population.

    Of course, it's completely possible that this has nothing to do with Addison's. It seems it'd be hard to try to figure it out without going to the doctor, since there is a lot of crossover in symptoms between celiac and addison's. Plus, celiac is supposed to make you pale, and addison's is supposed to make you dark (especially in certain areas).

    I'll go to the doctor when I can. Thanks again for your posts.


  12. How low was your Vitamin B12 ? What is it caused by ? If you have peripheral neuropathy caused by low B12 - oral supps probably are not for you. It means you may have a more severe B12 deficiency caused by Pernicious Anaemia or Gastritis or malabsorption and you need B12 shots for that. PN Can start when your B12 drops below 350. I have PA - an autoimmune disease which means I lack Intrinsic Factor in my stomach to absorb B12 from my food. An oral supp would do nothing for me. I need shots every 3 weeks. Due for one now - can feel feet tingles coming back - and that is 18 days since my last injection.

    I don't know about the other person, but I haven't had the shooting pains for long. They started in January at the same time I got super sick with celiac-like symptoms for the first time. The pains went away when I went gluten-free. I've been sick twice since then (gluten exposure, I'm sure), and the most recent time my pains reappeared. I'm recovering, but I still have a tad bit of pain here and there and some tingling.

    I have a phobia of needles.

    Question: Are you familiar with the term "geographic tongue?" I had one for years. It's where your taste buds flatten out in certain places, making your tongue look like a map. My taste buds all grew in when I went gluten-free! Then, when I got sick again, my geographic tongue came back - I lost taste buds again. And now that I'm getting better, my taste buds are back AGAIN !!!!! People seem to be divided on what a geographic tongue is caused by. I saw at least one reference to b12 deficiency as a suggested cause. Some people don't think it signifies anything and is just hereditary.

  13. <span style='color:blue'>Okay, here's the vitamin workup on Reliv Classic:

    And what is this with "I know hundreds" ? Do you sell Reliv or something? A hundred people is actually a lot, and I kind of doubt that you personally know "hundreds" for whom this product has been effective.

    - Michelle :wub: </span>

    Yes, she sells Reliv. Do this google search:

    reliv site:glutenfreeforum.com

    Almost every reliv conversation is initiated by her, and instead of giving people information on how they can reliv from another source, she gives them her phone number and asks them to call her. not that there's anything wrong with being a rep for a multi-level marketing company, but my concerns about the product, specifically for celiacs, have not been settled.

  14. Not to be rude or anything - but Eloisa is obviously a Reliv rep. Reliv is a multi-level marketing business, like Amway. That's why it's not available in stores. That's why she gave you her phone number and wants you to call her instead of giving you the information you need via this forum. That's also why, if you do a search on Reliv on the glutenfreeforum site, Eloisa is almost always the instigator of the subject.

    Could Reliv be beneficial for celiacs? It's possible. But I saw a posting by someone who said it's not gluten-free, and who had problems with it. I'm going to search further. My mind is not completely made up because I like to see more than one reference. Plus, I still need to go to the main Reliv site (www.reliv.com) and look at the ingredients. It seems like, at the very least, it might be a decent product for non-celiacs.

  15. Givingthanx--taking B12 can not hurt you. Our body eliminates that which we do not use. I take 2400mcg (which is 2 mg) of B12 daily and my B12 just stays within the normal range. It is very difficult when you do not have medical insurance to cover testing. I didn't have insurance until just a little over one year ago and testing is so expensive. Try the B12 and see if it helps. It doesn't work overnight and sometimes when and if nerves heal, they will feel tingly, numb, prickly, etc even while healing. Check out neuropathy forums, Neurotalk and Braintalk are very good forums.

    Hi. Thanks for the advice. I had wondered if it was caused by B12 deficiency. I had bought a multivitamin which has a lot of B12 in it, but I have forgotten to take it for a week. You've reminded me. Thanks.

    As for cold hands and feet (since that is the subject of this thread) - yes, I have cold hands and feet. I just feel cold in general. Usually, when I go someplace, I keep my coat on. A lot of people think that's weird.


  16. Mary, did you used to cook gluten foods in your cast iron? That can also be a source of gluten contamination.

    Thanks for asking. No - I actually got the cast iron pans because I read somewhere that some of the non-stick coating in pans has gluten in it. And you know how it is when you use those pans a little while - traces of the non-stick coating come off in the food. So I got the cast iron after I went gluten-free.



  17. Hi. This is all pretty new to me. I had my first obvious gluten reaction beginning of January - bowel symptoms, severe fatigue and weakness, shooting pains, weight loss, constipation, etc.

    I got better after going gluten-free, but I've gotten sick a couple times after that. Plus, I have small lingering symptoms that have come back.

    I have suspected my lotion this past week, but I was so busy to look into it until now... One of you guys mentioned it - St. Ives Collagen Elastin lotion. So I guess I'm throwing it out.

    You know how it is - when you're cooking, sometimes you lick a finger, etc. I'm sure it gets on my food sometimes when I'm preparing it, especially when I cook right after a shower. I also use cast iron pans, and I rub oil on them after washing them - using my hands, of course. I don't have DH. But with this lotion on my face and hands, I'm sure I've ingested some of it.

    It'll be interesting to see if my lingering symptoms clear up after I get rid of this lotion.

    You guys might like to look into triclosan too. Do an Internet search on it. It's in antibacterial soap, among other things, and it is shown to cause bad problems with the endocrine system. I imagine some of you folks who have thyroid and/or adrenal issues may especially want to look into this.


  18. Hi everyone,

    Have you looked into peripheral neuropothy? It's nerve damage caused by the celiacs. My hands and feet were always numb and tingling, with shooting pains going up and down my arms and legs. since going gluten-free over 2 years ago the numbness, tingling and pains are virtually gone (after suffering these problems for years.) But they are still ALWAYS freezing. I don't know if there is any treatment or not, I haven't looked into it. One thing I asked for for Christmas though, is those battery opperated warming socks!!! Yeah!!! Can't wait to see what they are like.

    Wendy :D

    Hi. I have shooting pains in my limbs too! Now I KNOW I'm gluten sensitive (as if going gluten-free and getting better isn't proof enough. I had serious bowel symptoms and fatigue and weakness so bad that washing five dishes was a difficult job to attain. I got totally better when went off gluten)

    Anyway, I have two DQ1 genes, which EnteroLab says is the combination most likely to have pretty bad periperal neuropathy symptoms.

    Real interesting. I wonder what, specifically, is causing the peripheral neuropathy. I was afraid initially of Vitamin B12 deficiency. I don't have insurance. Plus I just lost my job. I went to a free clinic, but the doctor there, though nice, knew NOTHING about gluten sensitivity - even got bothered I was self diagnosing off the internet and told me to start taking gluten again. So I'm not really in a position to get good medical diagnosis at this time. I did invest in getting the gene test from EnteroLab. I need more money before I can do anything else.

    Not only did I get better the first time I got sick, but I got sick again after taking communion a few weeks later - with less severe, though obvious and marked, symptoms.

    This is bizarre. Sorry guys, but this is just SO weird.

  19. Would this be orthostatic postural hypotension? That means that your blood pressure goes DOWN when you stand up, and not enough blood gets to your head (at least, that's how it was explained to me).

    Could it also be somehow related to thyroid?

    Yeah, it's orthostatic hypotension. After reading your question as to whether or not it could be related to thyroid, I did an Internet search and found that it can.

    Check out this web page:


    I just wonder about my linea nigra - that brown line on my belly pregnant women are supposed to get - and I'm not pregnant. Makes me wonder. Hmmm.

  20. Hi. I just got my gene test results back. I'm double HLA-DQ1.

    Check out this web page:


    Specifically, check out the section titled "Why are gene results so complicated, and which genes predispose to gluten sensitivity/celiac sprue?"

    According to information available in that section (about 3/4 of the way down), celiac disease is caused by DQ2 90% of the time; it's caused by DQ8 9% of the time; and it's caused by DQ1 or DQ3 1% or less of the time.

    So apparently, it is possible to have celiac disease from DQ1 and DQ3.

    As for the difference between celiac and gluten sensitivity -

    It appears the only difference is that celiac involves villous atrophy of the small intestine, and non-celiac gluten sensitivity does not. Apparently (from the web page I already gave you), there can even be microscopic villous atrophy (whatever that means), but it would be gluten sensitivity instead of celiac. I guess that means there has to be significant destruction of villi for it to be celiac. There are all kinds of other damage that can be caused by non-celiac gluten sensitivity, including organ damage and neurological problems. That's just what I gather from my reading.