MsCurious

Don't about the other two, but the coconut ice cream (I got it at Whole Foods) is fabulous. Don't remember which brand.

Thanks! This put a BIG SMILE on my face! It's been YEARS since I've had ice cream!

MsCurious, Excellent articles on Gluten Intolerance! The articles shows that the medical profession knows there is other gluten Intolerance in addition to Celiac Disease. I notice that one article said that the medical research for Gluten sensitivity is where medical research was for Celiac 30 years ago. That explains why there is no diagnosis and treatment for those negative to the blood tests and biopsy. I hope it doesn

So Delicious Coconut Milk, ice cream, and coffee creamer are all recommended by me.

Coconut ice cream? And coconut coffee creamer? I've never heard of that...is there a specific brand that is exceptionally good? I've never tried the coconut milk either... how does it compare to Almond Milk? I like that, but then I love almonds. Thanks for the info!

I do not think IgE has anything to do with gliadin IgA.

I don't think it IgA and IgE affect each other either, but I'm not an expert.

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There are five antibody isotypes known as IgA, IgD, IgE, IgG and IgM.

IgA antibodies are present in tears, saliva, and mucus, as well as in secretions of the respiratory, reproductive, digestive, and urinary tracts. IgA functions to neutralize bacteria and viruses and prevent them from entering the body or reaching the internal organs.

IgE antibodies are present in tiny amounts in serum (the watery part of body fluids) and are responsible for allergic reactions. IgE can bind to the surface of certain cells called mast cells, which contain strong chemicals, including histamine. (Histamines are substances released during an allergic reaction. They cause capillaries to dilate, muscles to contract, and gastric juices to be secreted.) When an allergen such as pollen binds with its specific IgE antibody, it stimulates the release of histamine from the mast cell. The irritating histamine causes the symptoms of an allergic reaction, such as runny nose, sneezing, and swollen tissues.

Don't know if this helps, but its a source to reference, if you're curious.

I am glad you have a good attitude about waiting the month for the biopsy. That was the hardest wait for me. I tried all the gluten goodies I had an appetite for up till my biopsy. That is a good idea to go gluten-free on the day of the biopsy. You will have fasted for the biopsy. I clean out my frig and cupboard of gluten the next day. I really have been feeling better and better. The first few days were ruff. Then it gets better. I have been losing weight. Strangely I am not as hungry like I was all the time.

Keep me posted of your progress.

Thanks IGG for the positive thoughts and support... that means a lot to me... and it helps with the wait. I'm so glad to hear you're doing better and better!

I know a bit about those gene tests; the problem is the many ways labs report them.

Now those two different reports do not match at all, except for that they agree on that there is a DQ2, the first one says it is the celiac DQ2,5 but the second report says it is the less celiac prone 2,2.

Now what exactly does the lab report say?

Some people here reported that the results were not complete, but the lab did have the complete result and they got it when they phone or contacted the lab. Often they just report positive or negative for DQ2 or 8. (but they actually have the whole thing, both beta and alpha chains)

Note that the first report just looks for the presence of 05* and 02* which together make up 2,5 but there are a couple of possibilities, and one of them includes the 2,2 as well but the 2,5 is made up in trans. (by DQ2,2 plus DQ7 if it is DQ7,5 since that one has the 05* alpha chain)

by the way, one cannot rule out celiac with DQ2,2 since some do have celiac, just the risk is smaller than with 2,5. There have been several 2,2 here asking the gene questions.

I believe you are misinterpreting the post. The first two genetic sequences are the DQ2 and DQ8 markers that they look for when testing. They are listed for REFERENCE purposes only. (They listed those on my results as well, as a reference).

The FINAL test results listed are the actual alleles found during testing. In this case those two alleles together = HLA DQ2.2 is a MUCH smaller population than DQ2.5, but still does fall into the "pool of possibility" of developing or having celiac disease.

thanks. Yes. that may be very helpful. he usually gets the rash pretty quickly. I will follow-up on that.

(p.s. I have read some of your other posts on other forums and found them helpful as well)

Thank you its nice to know I can give back a little bit. Good luck with your son!

University of Maryland School of Medicine Researchers Identify Key Pathogenic Differences Between Celiac Disease & Gluten Sensitivity

Thursday, March 10, 2011

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Dr. Alessio Fasano directs the Center for Celiac Rsearch.

"Scientists at the University of Maryland School of Medicine’s Center for Celiac Research have proven that gluten sensitivity is different from celiac disease at the molecular level and in the response it elicits from the immune system. The research, published online in BMC Medicine, provides the first scientific evidence of a different mechanism leading to gluten sensitivity. It also demonstrates that gluten sensitivity and celiac disease are part of a spectrum of gluten-related disorders."

MARCH 15, 2011 Clues to Gluten Sensitivity

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"For the first time, we have scientific evidence that indeed, gluten sensitivity not only exists, but is very different from celiac disease," says lead author Alessio Fasano, medical director of the University of Maryland's Center for Celiac Research.

"There's a lot more that needs to be done for people with gluten sensitivity," she says. "But at least we now recognize that it's real and that these people aren't crazy."

Click the links for full stories... very interesting... most of it things we already knew... just nice to see the scientific medical community acknowledge these things!

Hello.

My son has been essentially gluten free for years. At first his reactions were more mild and brought on by larger portions of wheat. Generally, he would break out in rashes on legs, arms and face when eating wheat. Through process of elimination, we elimiated wheat. But he seems to have become more sensitive with time. Smaller, accidental, doses bring on diahrea, etc.

QUESTION: We are told that in order to get him tested we will need to give him gluten for several weeks. I don't think we can do that. But we would like to better understanding of what is going on -- if only to know whether we need to be more vigilant in avoiding accidental wheat, or cross-contamination issues, etc.

Thank you all in advance.

Does he break out in the rash pretty easily from ingesting gluten? If it is dermatitis herpetiformis the skin next to the rash can be tested for antibodies and give you a celiac diagnosis. In his case this might be a lot shorter time period on gluten to get a diagnosis, than the 3 months it takes of ingesting gluten to do an intestinal biopsy. I don't have DH, so I have no clue how fast it can show up... it was just a thought.

Welcome to the board. You do sound like you could be one of us. After you get your test results you should try the diet for at least a couple of months no matter what the results since false negatives are not uncommon. Ask any questions you need to while you are waiting to start the diet. I hope your feeling better soon.

Just remember, you need to keep eating gluten until all of your celiac testing is complete. Good luck!

Hi All,

I really need some clarification.

Here are my results:

Biopsy - Colon Doctor says I am fine. No Celiac Disease

Primary Care Doctor - Says yes you have it

DQ2 (DQA1 0501/0505, DQB1 02XX

DQ8 (DQA1, 03XX, DQB1 0302

Final Results DQA1 * 0201

DQB1 * 0202

I don't know if I have it or not. Please help me understand.

These tests are so confusing aren't they? I did a lot of research when I got my test results back. Keep in mind this is just what I "think" this means, from all the reading I have done.

You have TWO HLA DQ markers, one from your mother, one from your father. Within each DQ marker there are two alleles. In your case they are DQA1*0201 and DQB1*0202. This set of your HLA DQ markers looks like HLA DQ2.2

(DQB1*0202 allele is linked to several DQA1* alleles, the linkage with DQA1*0201 forms the DQ2.2 haplotype).

A small percentage of celiac disease are associated with this haplotype, and some disease causing gliadins are presented by DQ2.2. Having this marker does not mean you have celiac disease, it simply means you are in the "pool" of about 30% of the population, who have the possibility to develop celiac disease.

Having said that though, if you were NOT diagnosed with celiac and:

you have a genetic marker for celiac

you have celiac type symptoms

you respond favorably to a gluten free diet

you more than likely have a gluten sensitivity/intolerance aka: NCSG (non-celiac gluten sensitivity). If you can add a positive blood test to that list you have four out of five, on the list of diagnosing celiac. Biopsy remains the "gold standard" for determining positive celiac, however, I have read resent research that suggests a four out of five test is being used by some doctors to "officially" diagnose celiac. I'll post that below.

Four out of Five Test:

"Celiac disease is the only treatable autoimmune disease, provided that a

correct diagnosis is achieved and a strict, lifelong gluten-free diet is

implemented. The current diagnostic algorithm for celiac disease includes

initial screening serological tests, followed by a confirmatory small

intestinal biopsy showing the autoimmune insult typical of celiac disease.

The biopsy, considered the diagnostic gold standard, has been recently

questioned as a reliable and conclusive test for every case. Indeed, the

wide variability of celiac disease-related findings suggests that it is

difficult to conceptualize the diagnostic process into rigid algorithms that

do not always cover the clinical complexity of this disease.

Instead we find clinically useful the shifting to a quantitative approach that can be

defined as the "4 out of 5" rule: the diagnosis of celiac disease is

confirmed if at least 4 of the following 5 criteria are satisfied:

1. typical symptoms of celiac disease;

2. positivity of serum celiac disease immunoglobulin A class autoantibodies at high titer;

3. human leukocyte antigen (HLA)-DQ2 or DQ8 genotypes;

4. celiac enteropathy at the small bowel biopsy;

5. response to the gluten-free diet."

I have DQ2.5 and once my biopsy is done, I will be going gluten free regardless of the outcome, because I have the genetic marker, and the symptoms that are relieved by a gluten free diet. You might consider doing the same, it should help emensely! Hope this helps you! Contact your doctor with your questions... that's the best thing to do. Good luck and hope you feel better real soon!

After thought: The way you wrote your results, it almost looks like your two positive alleles were each from a separate DQ marker, meaning one allele from each parent. Typically, as in my case I received a solid DQ marker from on parent, meaning both alleles were within one marker. If you did receive one allele from each parent (when put together they indicate HLA DQ2.2) I don't believe your first degree relatives have nearly the chance of inheriting the same. I don't remember the official medical term for this type of situation, but celiac is less likely to be an issue within your family. You can always do more research.

EDIT ADDED: Since the third poster may have confused you a bit, let me explain that the FIRST two genetic sequences that you have listed in your post appear to be simply there for reference purposes, and are NOT your results. Your personal test results are the two bottom alleles (pair of markers) that you have listed under FINAL results. These two alleles indicate that you DO have genetic marker indicating the possibility of developing celiac disease (specifically HLA DQ2.2). If this confuses you.. send me a message, and I'll try to direct you to some information that may help you understand better.

Essentially, it appears that you have a postitive test for the genetic markers for celiac. Did doc do any serology testing for celiac (blood tests)? Was this an endoscopic biopsy of the small intestine?

Thank you, I'm just so glad to have all the testing behind me so I can get on with my healthy lifestyle!

You must be relieved to know you don't have Celiac! Good for you that you realize you have NCGS and will continue gluten free. That is exactly what I plan to do, regardless of my biopsy outcome. I will just be happy to know I don't have celiac, but having DQ2.5 marker and the symptoms I have, and knowing gluten-free makes me feel so much better, as soon as the biopsy is done, I'm gluten free. No more poison for me! Congrats to you salexander421!

If you have postive blood tests for celiac, and your symptoms are relieved with gluten free diet, I would just go with that. If you want a more firm diagnosis (aside from that endo that costs way too much for something you already know works)... I would ask doctor to run a genetic test, to see if you have the celiac gene(s) just as confirmation that you are probably right about your diagnosis, OR another one of the blood tests if you would feel better with a confirmation of another positive blood test, but either of those are much less expensive than the endo. Did you contact your insurance company to double check whether its covered? Just some ideas and thoughts.... Good luck to you!

Looks like that is the total serum test that test to see if you produce sufficient IgA, which you obviously produce more of.

Did your doctor say ANYTHING about that number being so high? Have you been tested for rheumatoid arthritis or any of the other things you mentioned? I know those are all disorders that commonly coincide with undiagnosed celiac.

He really didn't say ... but he did run another blood test... SPEP (Serum protein electrophoresis)I think? My new GI doctor did see something else that prompted him to look at this and then order some other blood tests ...which I don't have done until the morning of my biopsies... so I'm just mystified and curious. I hate all this waiting! I guess I just have to be patient, but it seems like it just goes on and on ... Thanks for your thoughts... I guess it could be something related, I really have no idea. But obviously ... something is causing elevelated IGA. The million dollar question is... WHAT?

I'm really not worried so much about getting an actual diagnosis as I am wanting an easier way to prove I'm not crazy. The testing doesn't bother me, I just don't feel what my doc wants to do is okay. One test at a time, basically because she's convinced that celiac is not a possibility. Yet I have not even had a full celiac panel done! I'm frustrated and I'm tired of stressing about it. I just want to go completely gluten-free now and say screw the docs but if I do I also don't want to deal with the questions and not have a "conventional" reason behind it. I know I don't need one for the sake of other people but it would make life easier.

Hi missj! As I was reading your post... I had to look again to make sure I didn't write it! LOL I went through the same thing! After ONE test (negative tTG) and him dismissing my concerns, I told my doctor I wanted the genetic test so that I could feel comfortable dismissing celiac as a possibility. If it was negative... fine, I'd look elsewhere...if it was positive... with the symptoms I have, I wanted more tests. Perhaps that's the approach you need to take. It IS so frustrating trying to educate doctors on new research and findings, and get them out of the dark ages about celiac disease and gluten intolerance in general! I hope you get the answers you seek!

Hi All,

I posted this before but didn't get any response, so I guess it confuses the rest of you just like it confuses me, but ... Can anyone give me thoughts on what would make this IGA level so elevated?

IgA 615 Range: 40 - 375 mg/dL (seems elevated out of normal range to me? Any idea why?)

IgG 1020 Range: 600 - 1600 mg/dL (seems mid-range normal to me)

Is this a non-specific total of antibodies - not specifically related to gliadin? So they are elevated but I don't know why... frustrating lol

Update:

ugh... I just found this little tidbit...which I guess somewhat answers my question:

IgA. High levels of IgA may mean monoclonal gammopathy of unknown significance (MGUS) or multiple myeloma is present. Levels of IgA also get higher in some autoimmune diseases, such as rheumatoid arthritis and systemic lupus erythematosus (SLE), and in liver diseases, such as cirrhosis and long-term (chronic) hepatitis.

More medical mumbo-jumbo... still don't know why mine are elevated...

Glad to hear you are seeing a good doctor. Staying away from dairy can be hard. I have been lactose intolerant for a long time. You will find you will stay away from dairy since you will feel better. Why is the doctor having you stay away from dairy before the biopsy? Does it interfere with the biopsy? Just wondering.

Hi IGG, Nope, has nothing to do with the biopsy...its just making me sick! LOL Minor side effect. Between the lactose intolerance and gluten sensitivity... its just a lot to handle. Just need to get through the month and the minute the biopsy is over... regardless of the outcome... I'm going totally gluten-free, since I have a ton of symptoms, and DQ2.5 marker. That's pretty strong indication of NCGS at the very least, and my lil "mini-tests" have proven how much better I feel off gluten. Essentially, the only thing the biopsy will do (in my opinion) is possibly pinpoint the "type" of gluten sensitivity I have (meaning possible celiac disease)... but like so many others already know...here on this forum... there seems to be a veritable menu of gluten sensitivities out there...that they haven't found the right test for... or given a name too...but that doesn't give them any less validity. Gluten sensitivities are real... and based on the fact that different genetic markers are involved and people have such different symptoms...there's just a TON of things they do not yet know about this toxic gliadin and its cousins of the barley and rye branch of the family tree.

Whew...that was a mouthful! LOL Glad you're feeling better! I'm really really really looking forward to this month going by so I can feel better too! BUT I have to look at the positive side.. since the GI told me to gluten up before the biopsy... I have a month to taste all my favorite gluten foods one more time before giving them up to non gluten forms. ALways have to look for the silver lining! HAHA!

I'm just happy to have a plan going... I have biopsy schedule and I KNOW when I get to go gluten-free! That and knowing I did all the testing I should first, makes me very happy,.

So I was reading that if I do the genetic test, I don't have to eat the gluten. I have been gluten light for over a week now and although I'm still tired and am still constipated, it's not AS bad and I have had 2 good weeks with enough energy for the gym. Plus, I have GAS! For the first time in months, I can feel things moving, I burp and toot and its fantastic!(Sorry if I'm over enthused, but when you feel like you have had bricks in your abdomen for 6 months, you get excited about these things!) I originally wanted to just try it for a couple days and then go back on gluten full force so I could get tested the right way but I don't really think it's worth it. My brain is starting to go and I since I work with young kiddos that have moderate disabilities, I can't have that. I forgot to walk a kiddo out to a parent today at dismissal and the gym teacher had to do it for me...boy, was I embarassed! It was fine, but for the sake of the safety of the kids, my co-workers and myself I can't let this fog get anymore dense.

So I have concocted a master plan! (insert evil laugh!) I am going to try and make a deal with my rather devilish-condecending gastro, who has this insatiable need to scope me for UC/Crohns and NOT Celiacs: Do the genetic test first. All of them that would show the possibility of Celiac/gluten intolorance. If they come up negative, I'll agree to a scope. If they come up positive, I'll go gluten free, leave you alone and we'll all be happy.

Think it will work? Or am I just kidding myself?

It seems you're aware that a positive genetic DQ2 or DQ8 simply either eliminates the probability or includes you in the pool of possibility for celiac disease. It basically does nothing for a diagnosis, although with symptoms, it is a pretty strong indicator of gluten intolerance of some sort. I was going to just go with that too, but after doing some reading, and realizing the impact of actually having celiac and not knowing for sure was enough for me to let them schedule the endoscopy. I also found out (when seeing the GI) that there were some elevations in my lab tests that meant something to him, but that didn't "register" with my GP, so I would highly recommend really visiting the options and the reasons for actually finding out for certain.

I figure if my endo biopsies are negative, I'm gluten intolerant, but not celiac.... and if its positive, I know for sure and can monitor other issues that could potentially be a concern down the road. The other thing is, if you find out for sure, it is an important piece of information for your relatives. For me that was really critical, because not only are my parents and son involved, as well as my 5 siblings, but I have 10 aunts and uncles and 49 first cousins who could benefit from knowing for sure.

Do what you feel is best for you, just be aware that you have a "window of opportunity" that is essentially diminished if/when you go gluten free without being biopsied first. Many people here have idiot doctors that "just don't get it" and try as they might... couldn't get the test or the support from doctors and had to go gluten-free on their own. They did what they had to do, but if you have a choice, give it some good consideration, and THEN AFTER the testing ... go totally gluten-free (not just lite...because that really does NOTHING for you". That's just my thoughts on this. Good luck..and hope you feel better soon!

An innocent child is sick and can't defend herself in a world filled with ignorant, and selfish adults! That makes me upset and very sad for the child. Don't give up! It sounds like you're the only one looking out for her!

Maybe your sister doesn't want to be bothered with a special diet. Maybe her husband has convinced her that its no big deal, but they BOTH are responsible for that child's well being and IMHO could be reported for child neglect if they refuse to meet her medical needs.

I think the other poster had a good idea... can you go along to her next appointment? If so, go in "armed" ...have solid research information with you from places like Columbia University Celiac Center, and the one in Maryland, and University of Chicago Celiac Center, and Mayo Clinic in Rochester, MN. There's TONS of research studies, guidelines, etc you could take with you, from proper serology cascades, appropriate treatment -Glute Free Diet, and studies that suggest even a pinhead of cross contamination can put a celiac into a tailspin and undo months of healing.

Make it happen! You're her only hope, and you'd never forgive yourself if you didn't try to help her.

Oh, and as for having a mild form of celiac... That would be like saying "I'm just a little tiny bit pregnant... it doesn't really count" ... or "Don't worry about that guy over there... he's just a little bit dead" Pretty ridiculous!

Yup, I am in agreement with Mushroom...biopsy trumps blood work (unless you are an alcoholic, anorexic, malnourished, have gastric infections, soy intolerance and/or dairy intolerance)

But pretty sure you're a new member of the Club! Welcome! Doctors and Staff just need to read up on the newest research...or we can just inform them!

Yep, what Mushroom said! If I were you... I'd go gluten free starting... RIGHT NOW!

Once again thanks for the responses. I have no Gluten Allergies, however for many years I have not eaten many wheat based products regularly. I have always believed carbohydrates are the leading cause of many health problems so I have abstained. So please stop bashing me about wanting to keep eating Gluten. I could care less, I barely eat it right now anyway. My wife however loves bread and loves kit kat's, etc. Just last night when she found out she would never be able to have a kit kat again, I dealt with a very upset young lady and promptly drove to the nearest gas station to buy as many different candies that I could that were gluten free, to console my crying wife. THIS ISN"T ABOUT ME!!!!!

Hi JustForJen... Don't know if you want my two cents or not...but here it is. I think its great that you're here trying to figure it all out, but Jen is the one who needs to log in here and really read, and learn, and whine and cry and laugh, and learn that it isn't punishment, its freedom! If/when she comes here... she will no longer be feeling sorry for herself, she'll be among friends who ALL have the same issues, and she won't feel so alone, or lost or scared. WOW... you got a LOT for two cents! Tell her to come join us... its a pretty nice and helpful bunch!

Thanks so much ... all of you for your suggestions. Silly as it sounds ... EVERY tip and suggestion for palatable replacements is VERY MUCH appreciated! Very very helpful! It doesn't feel quite so ominous with choices... but when its all unknown and there are no choices... that can feel overwhelming. So THANK YOU!

I am new to this forum and being Gluten free but something I DO know about is a Vegan diet. Find yourself a vegan friend There are a lot of non-dairy alternatives out there they can help you with. I use Daiya Cheese. It comes in Cheddar and Mozzarella (spl?) The cheddar taste like American cheese and it melts. I use in for machos, tacos, casseroles. I love in a small town and I found it at the health food store. It is a great alternative.

Ooooh...thanks so much for the info! I had NO IDEA that was available! I'll give it a try! Thanks to you too salexander421.

Quick histoy:

Appx 5 years ago I quit eating gluten. For six months straight I had a sinus infection that wouldn't leave and my friend said to get rid of the typical food allergins.

So I did gluten first, seemed easiest. And within three days my sinus infection cleared. I continued not to eat gluten for a week then tried a few days with eating it again and my sinus infection came back.

So ever since, I've been gluten free.

I did the 'home' test because I lacked insurance for any real testing.

During those five years I would 'test' myself. And each time, almost immediatly after eating it, I feel tired and my sinuses swell. On the other hand, I can eat fries and things that have touched gluten and not be bothered!

Now I have insurance and I want to get tested. I'm going to see my allergist about it and see what he suggests, but HIS nurse told me I'll have to eat gluten for 2 months before I can be tested?

I this accurate? I could only imagine what two months of gluten would do to me...

Allergies tend to flare up readily after contact/consumption (usually immediately ...up to two hours after). Have you considered a wheat or yeast allergy or something like that? Seeing your allergist is a good start. Intolerances tend to act up anywhere from a few hours to a few days after consumption of the offending food. It does almost sound like you possibly have an allergy rather than an intolerance. Definitely talk with your doctor about this, and the differences in the two.

I will be hanging around the "pre-diagnosis" forum for another month! Saw new GIJoe today, and he was SO much better. He actually listened, wrote things down, asked questions, told me of his concerns, and ordered some new lab tests and is going to do (8)biopsies mid April. Instructions were to stay on gluten ...and cut out the dairy completely (sheepish look) Apparently he wasn't too happy with my hap-hazard attempts at removing dairy from my diet. He gave me strict instructions... zero dairy. I'm sad! I think that will be harder than zero gluten! I do sneak cheese sometimes, even though I know I shouldn't.

He said he really hoped I didn't have celiac disease or gluten intolerance, because it will be a huge change, without both. Quite doable and healthy... just not fun. I know many of you are in that same boat, so if/when that time comes... I'm going to need all the advice and suggestions I can get. Until then, I hope to be a good listener, and maybe share a kind word and encouragement to those just starting this journey. Again, thanks for everybody's kind words of encouragement and support. Its not a fast thing to get this all figured out, that's for sure, and you all make it easier, and less painful, while I play the waiting game one more time.