Hla-Dq2 & Hla-Dq8 Blood Tests Positive For Celiac Is This Definative?

[Lisa Purcell]

My doctor gave me the clinical diagnosis two days ago that I have celiac disease.  She based this on my symptoms combined with a blood test for the genetic marker coming back positive.  I think the test that came back positive was the HLA-DQ8 test.   I asked her to order a biopsy which she has agreed to do.   She feels the biopsy is unnecessary because she is certain I have celiac disease based on the tests and my symptoms.   She also said I have Candidiasis and Leaky Gut Syndrome.   So, I am going to start a course of Nystatin.  Can you tell me if I should consider myself as indeed having the Celiac Disease?  Am I being weirdly insistent to want the biopsy done? Also, can I touch wheat- i.e.make a sandwich for my husband if I wash my hands after? 
My doctor filled me with anxiety about having celiac disease saying I can't even use lotions or hair dyes unless they are gluten free.  She said that even foods that say gluten free are not always really gluten free. She said they had to say "celiac free" which is something I have yet to see on any label.  Please give me any information you think would help me as I navigate this new diagnosis.   Thank you.  ​

[kareng]

Just having a gene for Celiac does not mean you have Celiac. If she did a genetic test, she must have done the Celiac Blood tests for antibodies that would show you have developed Celiac?

If you are going to see a GI for a biopsy, keep eating gluten until after the procedure. I am guessing you didn't see an actual MD based on some of the stuff you were told.

Also https://www.celiac.com/forums/topic/91878-newbie-info-101/

Open Original Shared Link

If I have a gene for celiac disease, does that I mean I have it?

Genetics don’t diagnose celiac disease. They do, however, clarify whether an individual is “at-risk” for it. If this is the case, you should closely monitor your symptoms and submit to blood tests every 2-3 years or immediately upon the sight of symptoms. When the genetic predisposition for celiac disease was detected (on Chromosome 6) researchers noted that the genes were a necessary but not sufficient condition for the disease to develop. In fact, up to 1/3 of the U.S. population has the genes for celiac disease. Meaning, those who have the DQ2 or DQ8 gene can develop celiac disease at any time, but only about 5% of those people actually will.

[bartfull]

Wow. Most of us go through hell and high water to get a diagnosis and here you have a doctor ready to diagnose you without testing! It is possible that you DO have celiac. My doctor gave me an official diagnosis based on the fact that my Mom had (diagnosed) celiac and the fact that my symptoms resolved on the gluten-free diet. But that was because I had no insurance to pay for testing.

 

The other info she gave you is pretty shaky though. Unless you have the DH rash, hair dye and lotions will not be a problem as long as you don't get them in your mouth. The gluten molecule is too large to be absorbed through the skin. All you have to do is remember to wash your hands EVERY TIME you plan on putting something in your mouth.

 

And I too have never seen a "celiac free" label. There are gluten-free labels and CERTIFIED gluten-free labels. The certified ones are on foods that have been tested so you know without question they are safe. gluten-free labels on most things in the grocery store have not necessarily been tested but under a new law that was passed (in the US) last year, they SHOULD be gluten-free. If people have problems with a food and notify the FDA they will go in and test them. If it turns out they are NOT gluten-free, the company gets into trouble. I think most companies want to avoid that kind of trouble so generally speaking, I trust the gluten-free label.

 

The good news is that there are so many naturally gluten-free foods - plain meats, veggies, fruit, rice. You should be eating a simple whole foods diet at first anyway. Processed foods are harder for a damaged gut to deal with.

 

When it comes to substitutions like bread (I like Udi's multi-grain or Canyon Bakehouse 7-grain), well, they are full of calories and not much nutrition. They are nice to have but not to excess. Believe me, I am famous around here for my love of grilled cheese sandwiches and my figure shows it.

 

But generally speaking, there are tons of good tasting foods you can eat. You need to learn how to avoid cross-contamination though. You can do that by reading the Newbie 101 thread at the top of the coping section here on the forum.

 

It sounds like you really don't want this but if it turns out you do, remember, everybody gets health problems. We are lucky enough to get a health problem that can be controlled with diet rather than surgery or medications with all their side effects and cost. And because the world has become so celiac aware, it is so much easier now to eat delicious and safe foods.

 

So go read that newbie page and then come on back and fire away with any questions you have. We're here to help.

[foam]

Your doctor is right. If you have both dq2 and dq8 you should not risk eating gluten. Also people with celiac disease are easy to pick for anyone with some experience. The hla genes are inherented from ancient humans, it gives you immune system advantages but isnt really compatable with modern processed life. It runs deeper than just gluten imho.

[squirmingitch]

Yes, you can make a sandwich for your husband if you wash your hands after.  You're allowed to touch gluten as long as you don't get it in your mouth or inhale gluten flour which will go down your throat into your tummy. That's a long winded way of saying you can't mix up gluten cakes or bread or play with gluten flours.

[Lisa Purcell]

First of all, thank you all for the thoughtful responses.  
To give further information: Yes, I do have the symptoms:
*  I have the rash on my arm and butt.  I have had this for 4-5 years off and on.  Two dermatologists and two PCPs could not resolve or even identify the rashes. One doctor even had  them biopsied. 
*​ Everything hurts, I have arthritis in my hands, foot and back but they bother me far more than they should according to the doctors.   The last spot to be discovered to have arthritis the doctor was amazed I could even feel it.  He said it was in just the beginning stages.  To me, it feels like I am being stabbed so I could not believe he was surprised I could feel it.  I was diagnosed with ulnar neuropathy this winter as well.   They seemed surprised I could feel that too.  If I were a dog there are times I would have opted to put myself down.  Yet, the doctors seem surprised I can even feel the pain.  Yet, each time I complain they find something wrong.
* I have fatigue, at times I am almost lifeless. This winter I would make my bed, eat breakfast and find myself wishing I could go right back to bed. 

* I have breathlessness.​
* I ​night sweats, I had them so bad last winter that I could stand outside in 25 degree weather in my underwear. 
* I have​ anxiety and  depression.
* I have balance issues.  I fell five times in one summer.  My doctors attributed that clumsiness to my back issues.  Sometimes, I can be standing near a person and just start to topple over.
* I went to a new doctor and she did a bunch of testing starting with stool and blood.   Determined that I had a bunch of missing bacteria and was lacking digestive enzymes. She said that I had Candidiasis and Leaky Gut Syndrome.  She suspected Celiac Disease back then as well but did not test for it.  I had to go on a yeast free, sugar free, dairy and egg free, gluten free, with allergen test and food allergy restrictions diet.  I took Nystatin and a bunch of supplements.  I felt way, way better. Then I went back to my old diet.  I got sick again last winter.  Went back to the clinic but my old provider no longer there.   My new doctor is the founder of the clinic. She suspected Candidiasis was back and also that I had Celiac Disease. She did all the previous testing again as well as additional stool testing and now this Hla-Dq2 & Hla-Dq8 Blood Tests.  She determined that the Candidiasis and Leaky Gut Syndrome are indeed back.  She put me on Diflucan and more supplements and a good probiotic.  She is 100% sure I have Celiac Disease. She has ordered Nystatin again (it is being compounded for me).  I am again on the weird diet.   No yeast, sugar, gluten, and I am supposed to stay away from foods that I am allergic or sensitive to according to the first blood tests she did.  
I know I am leaving out symptoms.  ​
Historically I have had pernicious anemia and Epstein Barr Virus (I was told I had the chronic -reactive version when I was initially diagnosed and then I was told I had actually had one years' long infection and that it would not recur).   I have had so many weird diagnosis over the years. I have felt sure there was some auto immune issue going on.  At least this diagnosis gives some answers.
I insisted on a biopsy because I have read it is the only definitive way to know.  My doctor feels she does know after the blood test she ordered.​​  Anyway, thank you for the help and the links.  

[cyclinglady]

I think you need to do some more research.  Start at the University of Chicago's celiac website.  The gold standard for diagnosing celiac disease is an celiac antibody blood panel and intestinal biopsies.  The genetic test helps rule out celiac disease.  I think Karen previously provided the same link....

 

Open Original Shared Link

 

Here's from the American GI org group:

 

Open Original Shared Link

 

Now, for some folks getting an endoscopy is beyond their reach.  Either they lack insurance or there could be very long waits and folks just go gluten free on their own.  It would be nice, if the endoscopy could be skipped, but science is not there yet.  I do not know how leaky gut gets tested, but intestinal damage from something like celiac disease could cause leaky gut.  So many of us have food intolerances beyond gluten.  The endoscopy can rule out other things like H Pylori, cancer and SIBO (negative in my biopsies).  

 

In any case, you have to be consuming gluten for up to four weeks for an endoscopy.  

 

Going gluten free for life without a formal diagnosis.  It can certainly be done.  My husband did it.  He went gluten free 14 years ago based on the poor advice of my allergist and his GP.  It worked though.  He's healthy! He refuses to do a gluten challenge and I can not blame him!  But he will be the first to say that I have had more support from family, friends and medical.  I just changed insurance.  I brought in my GI Lab results and there was no question of my having celiac disease.  In fact, they easily ordered follow-up tests, bone scan, etc.  This is something to consider.  

 

I hope you find this helpful!  

 

I

[Lisa Purcell]

According to the test, there were three HLA things -Dq2, DQ5, & Dq8 and a fourth whole celiac item (I can't recall the exact name at the moment) that she tested for. It shows that I have the genetic gene necessary. That is what she was looking for, the genetic possibility. She was already sure I had it because of my symptoms and also based her diagnosis in part, on my dramatic improvement -that is, my symptoms resolved when I stopped eating gluten - even the rashes are gone. The weird stain the rash on my arm leaves when it stops looking rashy - well, even that is gone. This was the basis of her diagnosis. My husband I can tell she is on to something with the gluten. She based the Leaky Gut Syndrome diagnosis on a blood test and stool testing. It showed the foods which had leached into my system and which trigger an auto immune system response now. This testing all showed undigested food, lack of digestive enzymes, lack of necessary bacteria(I am not a doctor so a lot of what she said gets weirdly paraphrased by me). She said Candidiasis can cause Leaky Gut Syndrome if he goes undiagnosed long enough. She is sure I have Celiac Disease. Yet, I want the biopsy. My reading suggests that I need a biopsy to confirm the diagnosis. That you can't just base a diagnosis on the gene being present and symptoms - and then the resolution of symptoms as she has done. She has ordered the biopsy. When they call me I will let them know I have been off Gluten since July. I am willing to eat gluten to find out. My doctor can't understand why I still want the biopsy but she does understand that I want to know. That I think only a biopsy is definitive. We are also going to do the DNA test on the Epstein Barr Virus. I want to know about that once and for all. When initially diagnosed I was told I had a chronic, reactive form of the virus. That I would get "mono-like symptoms" for the rest of my life. No cure. Stress was the trigger they said. This diagnosis was given to me 18 years ago at the Memorial Herman Hospital in Houston, TX. I can't believe they were wrong. They are after all, a world-class institution, but an infectious disease doctor here in Maine said she looked at the DNA of the virus and in her opinion it was one years long infection that would never come back. Yet, I still get sick. No one can find this test if she indeed did it. I sent for the records myself and she only notes the DNA test should be done. Our insurance never paid for it. We were never billed for it. So, my guess is she never did the test - so, I want that test done too. I just want to know. I feel for the people without insurance or the means to obtain testing. I have been there. When I first got sick I was working as a waitress. I had no money. I was so sick and lifeless (I used to be high-energy so the change was startling) everyone was alarmed. My employer cancelled her own doctor's appointment to take me in to see her doctor. I had no insurance so he refused to do further testing. Just said my blood cells were abnormally large and misshapen and there were too few of them but that I just needed rest. He sent me home from work for two weeks. My husband took care of me. At that point we were dating. I slept five days solid. I got up finally to take a shower. Fainted in the shower. He had to retrieve me. Having never been seen naked by him it was embarrassing. I was too weak and exhausted to care. I did improve with the rest but did not feel wholly well. I dragged myself back to work. I had to. A few months later we were married, I now had insurance. I found out I had pernicious anemia. The doctor said that would have proved fatal had I not discovered it. We were living in Mississippi at this time. We moved to Houston, TX. That is when I got the the Epstein Barr Virus diagnosis. Then we moved to Arkansas. Here I got the Degenerative Disease diagnosis in my back. Then the arthritis diagnoses started rolling in. I developed the rash at this time. Problems with my period. Anxiety. Panic attacks. Depression. My hair broke off - twice. Dry eyes. Dry feet. Joint pain, muscle pain, headaches, etc. My PCP in Arkansas simply treated new symptoms as they arose. We attributed almost everything to the Epstein Barr virus and treated the symptoms. Then we moved back to Maine and I got the news that the Epstein Barr had resolved - that it had been one years long episode and not chronic like I had been told. At that same time a different doctor informed me that I had Candidiasis and Leaky Gut Syndrome. We treated that with Nystatin and diet, probiotics and supplements. Now, apparently, it is back again and I have a new diagnosis of Celiac Disease to go along with it. Okay, before I ramble on about everything, lets just say I am left wondering how on earth I can have this much wrong. I can see why my new PCP is dubious. As he said, "One abnormal thing is abnormal. So many abnormal things is really abnormal." He went on to say that he feels a lot of doctors have been making me feel sicker than I am. He dismissed everything out of hand, including the testing he himself ordered this winter - testing that he said only showed only small problems. His testing revealed that all that sweating was not from peri-menopause - the FSH test reveals I am a long way from menopause. I have ulnar neuropathy and arthritis in another hand (I also have it in my back and foot). He also found out incidental things like I have a Vitamin D deficiency, the same abnormal blood cells that were revealed almost two decades ago, and some ANA titers and ANA patterns that were off but not apparently enough to be of concern. Off enough to be tested for Lupus but determined it is not Lupus. I had Candidiasis, Leaky Gut Syndrome stuff sent to my PCP. He discounted it. I will send him the biopsy once I have it. If it is Celiac Disease I want him to know it wasn't in my head. The doctor who diagnosed me is on the cutting edge. She wrote a book. People come to her from all over. Held in esteem by her colleagues. I will give her this, she listened and she is willing to order the tests. So, there is that. This is tremendously expensive, even with insurance. But after all these years we just want to know definitively. I think she is probably right but I have had a diagnosis before that is now in question. So, I want to know. So does my husband. p.s. My mom had ulcerative colitis. Almost died from it.

[StephanieL]

Did you see a GI doctor or a chiro?  A lot of the things you are talking about are more in line with a holistic practitioner than a GI Dr. 

[Lisa Purcell]

She practices functional medicine.  Dr.Marcel Pick. She is the founder of Women to Women in Yarmouth, Maine.  Open Original Shared Linkis my gynecologist.  My PCP wanted me to get an FSH test when I missed my period for three months this winter.  That along with night sweats, joint pain, fatigue, and rash had led me to his office this winter.  He suspected menopause.  He had me get the FSH test with Dr. Pick.   He sent me to a hand specialist and a rheumatologist.  The hand specialist sent me for an EMG (I think that is what it is called).  Anyway, Dr. Pick said I am no where near menopause.  When she saw my rash she thought immediately that the Candidiasis was back. Like my previous provider at the clinic she suspected gluten was a problem - that it might be Celiac Disease.  She has determined based on the gene showing up, the symptoms, and the improvement that I indeed have Celiac Disease. I plan to follow this diagnosis up with a biopsy done by a Gastroenterologist.   Dr. Pick does not think the biopsy necessary. She is 100% convinced I have Celiac Disease.   Which brings me back to my original question.  Am I being overly diligent in wanting a biopsy?  

​

[squirmingitch]

My 2 cents? I don't think you're being over diligent in wanting an endoscopic biopsy considering all the other diagnosis you have had along the journey. Just make sure they take 6 samples minimum.

[Lisa Purcell]

I think I will assume she is correct but also get the biopsy done. I am looking at the handout she gave me (she has this site listed on the handout as the place to go to for answers) and there are all these questionable ingredients that she has listed.  It says to check with the manufacturer before eating (assume there is gluten until verify otherwise): brown rice syrup, caramel color, dextrin, cereal products, malt or malt flavoring, malt vinegar, modified food starch, and soy sauce.  OMG is there no end to the places they will stick gluten?
Okay, so I am going to move on to stage two of living with Celiac Disease - researching hidden gluten.  Sigh... 
Thank you all for the advice and support, the links and the wisdom.   I am going to try not to lose sight of the fact that I feel way better than when I started this process last winter.  I even look better being rash free.   I feel less anxious today than I did initially.  Information helps. You have all helped. Thank you.

[squirmingitch]

Lisa, there are a TON of myths out there on the internet that just scare the crap out of people & the info. for celiac disease & where gluten hides in all manner of products is not exempt from the "terrors" of misinformation. Some of them are carry overs from old, old, old information before we had learned things & before certain rules were put in place by the FDA.

Anything saying malt in the ingredients is a total red flag & do not eat it.

Rye will hardly ever be found in anything but rye bread, rye crackers -- if the ingredients don't say rye then you're safe 99.999999% of the time. I do not worry about rye in the least.

Wheat MUST be listed as part of the FDA law on allergens. I believe it goes so far as to say it has to be listed as a possible contaminant if there is any possibility of cross contamination in the facility.

Then there is the gluten free ruling passed by the FDA & in full effect.

Read this & follow the links contained within:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

Modified food starch HAS to list if it's from wheat and generally the ingredients will list the exact source of the modified food starch such as saying it's from corn or it's from rice etc....

Carmel color --- I eat Log Cabin syrup & many other things that contain carmel color --- that's one of those holdovers from a long, long time ago. Carmel color used to contain or be made from barley but that is not the case any longer so relax.

[StephanieL]

 I believe it goes so far as to say it has to be listed as a possible contaminant if there is any possibility of cross contamination in the facility.

 

 

 

This is the only thing that is not correct.  There are NO laws (allergy or otherwise) that require the listing of may contains/processed in a facility warnings.  

[foam]

I think I will assume she is correct but also get the biopsy done. I am looking at the handout she gave me (she has this site listed on the handout as the place to go to for answers) and there are all these questionable ingredients that she has listed.  It says to check with the manufacturer before eating (assume there is gluten until verify otherwise): brown rice syrup, caramel color, dextrin, cereal products, malt or malt flavoring, malt vinegar, modified food starch, and soy sauce.  OMG is there no end to the places they will stick gluten?

Okay, so I am going to move on to stage two of living with Celiac Disease - researching hidden gluten.  Sigh... 

Thank you all for the advice and support, the links and the wisdom.   I am going to try not to lose sight of the fact that I feel way better than when I started this process last winter.  I even look better being rash free.   I feel less anxious today than I did initially.  Information helps. You have all helped. Thank you.

Just a note about the antifungals. I did diflucan and nystatin for many months at one stage. They arent very effective on candida and diflucan is a harsh drug, imho youll achive more on your diet but itll take a long time. Fungi can lay dormant for... Years no problem, its no instant thing. Try the antifungals but keep a watch on side effects and blood tests if you are doing them long term. Best way to change the fungal load is change the enviroment they live in. More acid and less sugar is good. Acid as in when your pee and poo is a little acidic all the time, itll go dormant but will take a very long time to go away. The diet shes suggesting will do that, just go with what she suggests. She sounds a good dr, not sure why you would do a biopsy when its captain obvious. Dq2 AND dq8 both together is very prone to all kinds of problems.  Modified starch is a problem wheat based or not, 1422 gives my son hives and has given my father siesures that he takes weeks to recover from and neither of them have problems with anything else. I stopped eating gluten years before I had any testing done simply because my mind would go weird within 5 minutes of eating bread and id have wild diarrhea 20 minutes later for.. 5 years i lived like that. Fixed the day i stopped eating gluten, the bleeding sores on my back ive had for 20 years have finally almost stopped now, 7 years post gluten.

[cyclinglady]

This is the only thing that is not correct.  There are NO laws (allergy or otherwise) that require the listing of may contains/processed in a facility warnings.  

True, but that is the reason I purchase foods from large manufacturers who disclose this information.  If there is no mention of it, I do not buy the product (at least not for my consumption).  I wish drug companies would disclose this information!  

[Lisa Purcell]

It was just  the HLA-DQ8 that came back positive.   She has a great reputation as a doctor.  She is certain of her diagnosis.  The more I read, the more certain I am she is correct.  I can see my rashes are gone too. They are never this gone. Even the stain is gone.  Actually, they were gone this much one other time - when her clinic took me off gluten two years ago. More than anything else that shows me she is right.  Other symptoms too are vastly improved: fatigue gone, constipation gone, I am not hurting - except for my back which is still way less b%$@#y than normal. I even feel less anxious than I had been.
I had to insist on the biopsy.  She ordered it for me because she could see how much I want the confirmation. I had read it was the only definitive way to know.  Just this morning however, I have started to doubt whether I really do need the biopsy.  I still want it, yet, at the same time, I am beginning to realize it is probably stupid to eat gluten and make myself sick just to prove what I am more and more sure is a correct diagnosis.  It may even be a mark of immaturity on my part.   To be honest, in part I want the biopsy to prove to my PCP that it is not just the beginnings of arthritis, menopause, and anxiety (he did say he could believe a gluten sensitivity). I want him to have to take note and hear me.  Probably a pointless and more likely to be a frustrating exercise. I long before this have thought I need to get a new doctor anyway. He isn't a good fit. So why waste my time and make myself sick to prove a point. But it isn't just that I want to prove a point, I also want something that in future any doctor will take note of.  But maybe you are right.  It is obvious that it is Celiac Disease.  Maybe I should just let it go.  I will have to run that past my husband.  He is always the voice of reason. Thank you for your advice.
You have all been so generous with your time and knowledge. Thank you.   ​

[cyclinglady]

Lisa,

 

Foam is right about the dangers of using Diflucan long term.  If I were a betting gal (and I am not a gambler even if it's not even my own money), I would bet that celiac disease is your issue and not candida (at least in your intestines).  If you have re-occurring thrush (mouth or vaginal) then you can disregard this statement.  

 

I was diagnosed when I was going through menopause (that last year).  I was severely anemic, had every postmenopausal symptom listed out there), and my thyroid was not stable (hypo and hyper swings)  and I could not get relief.  My doctors blamed menopause and a genetic anemia.  But really all along, I had celiac disease.  All found by chance at a routine colonoscopy (yep, I am old)  and after I went through the menopause window.  I was still anemic but not as severe, and my GI suggested celiac disease even though I had no known intestinal issues outside of a few food intolerances.  

 

Get to a celiac savvy GI.  Call and ask if he/she has any celiac patients.  Research and make sure he/she follows standard celiac testing procedures.   If you have the means to do an endoscopy and a blood panel, then do it.  A firm diagnosis can make it much easier to adhere to the gluten-free diet.  Trial and error is tough but doable for those who can not get a diagnosis.  

 

I wish you well!  

[Lisa Purcell]

I was sitting here waiting for a friend to write me back on Facebook.  I noticed my forearms.  I still have the hyperpigmentation that popped up last year.  I thought, "Could it be related to Celiac Disease?" Did a search and found this:  Open Original Shared Link. The article lists Celiac Disease as one of the potential causes.  Wow.  Another piece falls into the puzzle.  Any thoughts would be welcome.

[RMJ]

If you haven't had TTG and DGP blood tests (I don't think I saw them mentioned in this topic) I would get them before a biopsy. Less invasive and less expensive.

[Lisa Purcell]

I thought that was the test she had ordered(I didn't know the name of it but I thought she was looking for antibodies) but when I went in for the results Dr. Pick said she had been looking for the gene. Said the test she did was "controversial" but that in ten years it will be mainstream. That right now the test is on the cutting edge. I am not sure what she meant by controversial since all the sites she sent me to talk about the gene, etc. Maybe basing her diagnosis on it (plus my symptoms, plus the resolution of symptoms) is what is controversial. But as a point of fact, I am actually not sure she did not already do the antibody test. I have had blood drawn three times at a lab and the results sent to her office. I don't always absorb all she says to me. Her demeanor makes me almost have an anxiety attack. I sit there wanting to burst out of her exam room. I can't even put my finger on why she strikes me this way. My sister goes to her clinic and her provider also quit and she ended up with the Dr. Pick just as I have. My sister said, that just as I had felt, it would be great to have the actual founder of the clinic be her doctor, only she ended up feeling as I do. Thankfully, it is not just me, that Dr. Pick strikes her the same way. I was starting to think I was too sensitive. At any rate, Dr. Pick is making me feel worlds better so I am going to keep seeing her - for now at least (I may at some point find out where my old provider at the clinic has gotten off to)- even if I am having trouble following along. I think she must see me as remedial in intellect as I have to get her to repeat things. She can not understand why I insisted on the biopsy but she has ordered it for me. At this point, I am just going to get the biopsy. Yesterday, I vacillated between getting it or not. My best friend and my husband have convinced me I need to go for the biopsy. They say it is worth having to eat gluten for a month or more in order to know for sure. We are all sure I have a gluten problem no matter how it is looked at. The last time gluten was taken out of my diet I also felt well - in fact, nothing hurt. I felt like I did in my 20s. Lots of energy and I exercised every day. No rashes. It has only been since I resumed my normal diet that I have gotten the rashes again, hurt, fatigue, etc. etc. So, it isn't that I don't believe her. I feel she is onto something. I think the rashes are what, of all my symptoms convinced her it was Celiac Disease. Yet, in my mind, it could be a gluten intolerance. I mean, is it beyond all reason that I could not simply have an intolerance or allergy even as I do have the gene? I guess I could be in some sort of denial. I don't think so though. I believe I am glad to have an answer at last but I simply want definitive proof. As for the money, at this point, what difference does it make. We spent so much out of our own pocket and with co-pays that it doesn't matter. At this point, we just want to know. The Rheumatologist took 18 vials of blood out of me this winter at just one sitting. Dr. Pick has had me to the lab three times. My PCP had blood drawn too. Then there was the EMG and hand specialist. Not to mention the vials and vials of stool sampling. (I really know how to spend a winter hahahaaa - too soon for potty humor?) I go again Friday to get my vitamin D tested. The lab people have gotten so they look forward to me. They say I make their day with my sense of humor. I appreciate all the sound advice. I hope that when all this is finally and definitively answered I have something to share or I learn something to share so that I can contribute to something that has helped me tremendously. My doctor pointed the way to you for answers. That says something about her judgment right there.

[Lisa Purcell]

I was at an internal medicine doctor yesterday.  He said that she would have done the antibody test first. He knew of the clinic was impressed by it. Said she knew her stuff.  As we talked and he got my history he said that everything in my abnormal history is explained by Celiac. That I had Celiac first almost certainly it had led to the pernicious anemia and then the Epstein Barr virus Infection (allowed that to set up in me the way it did).  He went on to say all of it from the rashes to the fatigue and even Candida go along with the Celiac Disease. He said I don't need a biopsy to confirm. I certainly have Celiac Disease. He said he wouldn't pursue the DNA on the Epstein Barr either. Said you start to run into getting too many differing opinions on that one.  He was so knowledgeable. So kind and such a good listener.  He just merged his practice with the local hospital.  I go back to see him in January. I think I will see then if he can be my new PCP.  I also texted my sister in law who runs a lab to get her opinion. She said no need for the biopsy either. She concurs that I do indeed have Celiac. 
Thank you once again for all the advice.

[rehh05]

For what it's worth I tested negative on the ttg blood test as I had been gluten free for a long time prior to being tested for celiac. I had the genetic marker test to rule out celiac but those were positive, so we did the biopsy. The biopsy was positive even though I had been gluten free. I am now extremely carefully gluten free and can tell I am healing and am also very sensitive when accidentally contaminated by teensy crumbs. I have since discovered that my great grandfather died of celiac. 

[nora-n]

did you have both the 0201 and the 0302 beta chain and the halv DQ2 (05*) alpha that belogns to the 0201 beta positive? Otherwise the results give no meaning, as one has only two beta chains and two alpha chains.

"there were three HLA things -Dq2, DQ5, & Dq8 and a fourth whole celiac item"

The DQ5 would have been 0101in alpha and  0501in beta

 

But of course you could have SIBO that mimicks celiac

[Lisa Purcell]

I sent the testing to my sister in law. She runs a lab. She said it is the Celiac Testing I asked her advice. She is the smartest woman I know and she listened. She felt like I did initially that I needed a biopsy at this point.  Then, I told her both of the doctors' reasonings as to why they are certain it is Celiac Disease. I told her the best I could explain why they felt I did not need the biopsy nor that DNA test on the Epstein Barr Virus.  I told her all about my symptoms and the resolution thereof - at the end, she agreed I have Celiac. She said based on how sick I had been and how improved I am now and their opinions she too would accept the diagnosis and not go forward with the biopsy or the DNA test on the Epstein Barr.
Part of me still wants the biopsy to be able to "prove" it to people so it is incontrovertible. My doctor said it does not work that way. I am not sure what she meant, but I guess if she is sure I have it, the second doctor is sure I have it, I should pause before eating gluten for a month just to be able to prove it to anyone else.
I think what has my husband and I convinced that Celiac Disease is the correct diagnosis is the responsiveness of my rashes to the gluten. The rash I get on my arm and butt have both come back twice since they took me off the gluten when I was accidentally, "glutened". The first time it happened to me, I ate one shrimp off my stepmom's plate at The Olive Garden. She said they were hot and wanted everyone to try one.  She is 82 and we all love her so everyone in my family took one. The waitress came by to tell me it had gluten on it. I only had one but by the next day the rashes were back - just a bit, but it made me realize the doctor was on to something. The next time it happened involved the burritos I got from Wal-mart. Someone had put the regular ones in the gluten-free box. I have no idea how many I ate but after a few days I was lifeless enough to wonder if I had been "glutened". We figured it out. It really made us convinced the doctor is right. Now, I don't know why I felt so bad from just a few burritos when I used to eat so much more bread and not feel nearly that lifeless. I mean I didn't have the energy to do anything and everything hurt and the rashes were back. 
She put me back on Nystatin this past week. I had a bad, bad reaction. I called her and she took me off all the supplements, vitamins, everything. I go see her Thursday. I am bringing with me the thing I printed off of the internet that says I am supposed to get an antibody test, then the gene test, and then the biopsy. I want to know why she is so certain I don't need to do the biopsy. I think she is basing her diagnosis on the tests and the symptoms plus the resolution of my symptoms.  I would say that  if you can make a diagnosis this way she is correct. The second doctor, was impressed by who diagnosed me, impressed by her clinic, her reputation, said she was cutting edge. He said I don't need the biopsy. So, there is that. I think he was convinced not only by the recent testing and symptoms along with their resolution - but also by my medical history. Which is long, extensive, almost 20 years of stuff. He feels Celiac Disease was there first. Said that the other auto immune stuff makes sense in light of the Celiac Disease.I just read that Leaky Gut causes arthritis. I  don't know if that is true. I read Celiac Disease causes Leaky Gut.  I don't know if that is true but if so, it explains my arthritis too. I read it causes neuropathy. I was diagnosed with Ulnar Neuropathy just this winter (along with my fourth spot to find arthritis in).
I had a PCP in Arkansas for 13 years. He blamed my symptoms on the Epstein Barr Virus. We just treated the symptoms as they arose.  He gave me one thing after another for the rashes - nothing worked until I stopped eating gluten. That is, the rashes would clear up in the past only to return - but the arm one always left a stain.  I can't see my butt but my husband reports that it now looks as clear as a babies.     I find this the most compelling evidence. I have been to two dermatologists and neither helped even after getting biopsies. I think I have the DH rash. Of course you need to know what you are doing the biopsy for I read. The arm one the doctor felt looked like a t-cell lymphoma that had metastasized. The butt one he thought looked like herpes. Imagine that drive home to tell your husband that you may have cancer and herpes. As it turned out I have neither. I tried to tell that doctor that the rashes appear together, last for months, that I hadn't been with anyone but my husband in almost 20 years so the herpes one was just impossible and he said nothing else that he could think of comes and goes - I pointed out that my arm one mostly goes away. I pointed out that herpes doesn't last for months. I read recently that the DH rash can be confused for herpes. WOW!  (I  can see why my second doctor in Maine said that once you go down that road of getting other opinions you open up a Pandora's box.)  Anyway, my husband said he would be there if I had cancer and if I had herpes they would be his herpes too. He is an amazing person. He thought the dermatologist sounded like a moron and he was right.  Upon discovering I didn't have cancer or herpes the doctor just sent me home with ointment, which failed to help me at all, of course.
This is so overwhelming. One person tells me one thing, another person another.  Two doctors tell me it is Celiac Disease.  Could they be wrong?  Hey, I suppose so.  Clearly I have been misdiagnosed in the past. But those rashes, well they are visible proof that the gluten is a real problem. No disputing that. Two years ago another provider took me off gluten and they disappeared then too.   Until I resumed eating gluten.  
I just read that Leaky Gut causes arthritis. I  don't know if that is true. I read Celiac Disease causes Leaky Gut.  If true, it even explains my arthritis.
As for the  SIBO, well, I have had all kinds of stool testing done. Twice. Vials and vials and thousands of dollars of testing done. I am actually lacking in bacteria, lacking digestive enzymes, and stuff I can't recall what all of what she said but there were pages of results. I think she would have discovered too much bad bacteria.  Mostly,  I am lacking things.   Based on the testing she said, I am in bad, bad condition - her exact words.   She also said that the Candiasis is back and that I have Leaky Gut Syndrome.
Anyway, thanks for the help.