MsCurious

Hey Adalaide,

 

I'm a tomatoe lover too,! And with multiple food allergies, along with celiac disease, I was sad to find that tomatoes and I don't get along so well. BUT... because I'm stubborn, and do ridiculous amounts of research about everything...and always have... I decided to do a little research and try a few "tests" ...which I often do, to broaden my "safe food" list. After some trial and error I found that I can tolerate quite well actually.... Roma tomatoes ... IF ... I cut out the fleshy center and rinse out the seeds, essentially leaving the outer tomatoe without all the "reproductive seeds and juices". Its amazing what a difference that has made! I can eat them with no problem if I do this little bit of prep work. Just take out the seeds and rinse .... and I'm good to go. 

 

Nobody was more surprised or happier than I, that I could still eat tomatoes!  I put them on sandwiches, and in salads daily...with no more issues.  I haven't tried this with other varieties...although I'm planting 3 different varieties and will try this with them, as well to see if I can tolerate them. Hope this helps you!

Tonight we had Pork Ribs and Sauerkraut... YUM! It's an old family recipe handed down for generations... and sooooo good! It felt like a good night for some German cuisine! As my mom says... you have to serve it with baked squash and of course applesauce... its THE LAW! lol

What brand salad dressing was it?  Did you chop your veggies on a wooden or plastic cutting board previously used for gluten?  Also it may not be a gltuen thing, it may just be that you need to avoid raw veggies for a while.  My stomach could not handle raw veggies and beans for about the first 6 months I was gluten free, but now I eat them all the time.

Hi GFM, It was Paul Newman's Raspberry and Walnut. And yes... I did use a wooden cutting board... previously used for gluten...    I forgot.    It's not the raw veggies... I love salads and eat them all the time. It was probably the cutting board.  

Good news! My follow-up with my doctor went well. My biopsy was positive, and he was able to show me that my villi were blunted. He tested my thyroid, as well, and luckily it's normal. I got a lot of my questions answered about my lactose intolerance, and he seemed pleased with how I've been following the diet so far. Going back in three months to get my blood tests re-checked - my levels were pretty high (tTG was greater than 300 - yikes!), so here's hoping they go down soon!

That is GREAT news JessicaNYC! Congrats on getting things going in the right direction. It sounds like you're adjusting really well, and have a great outlook on things. I think that is half the battle. Great to hear success stories like yours. Glad you're doing better!

I got the results this morning. Celiac panel was totally negative. The doctor says he thinks I just have severe gluten intolerance and admitted he was surprised I wasn't positive for Celiac. He also said I absolutely don't have IBS... that it was a lazy diagnosis from previous doctors. He's putting me on Miralax to help regulate me and he still wants to do a Hida Scan, and possibly an endoscopy if things don't improve in the next month of being gluten-free.  

Frustrated because yet again, I have all these symptoms and don't seem to have a concrete diagnosis.  
He also says that even though I'm not lactose intolerant- I'm 'lactose-sensitive' and should avoid it until I give my body some time to recover from being glutened.

Anybody else had similar experiences to this???

Hi Jen, Yeah, I'm sure there are a LOT of people who have had similar experiences. I suppose I could be considered one of them. I would ask you, what tests you had done, and what the results were, because there are so many false negatives.  In my case, they did tTG first, and they told me the results were negative. My gene test came back the highest risk gene possible, and when they did my EMA test... they didn't really DO it. They drew the blood for it, but the lab never did the test, yet they told me it was negative. I did NOT find out the the truth until I went to the clinic and got copies of the actual lab reports. My tTG was NOT negative, it was borderline, and I found out the EMA was never completed.

The reason I am telling you all this is, that I have TONS of symptoms, and I very well could be NCGS/I (non-celiac gluten sensitive/intolerant) HOWEVER, I may very well have celiac disease. I had the biopsy done two days ago, and have to wait two weeks for results, but at least (if the lab knows what they are doing) I will have a definitive answer. Because of my symptoms, and response to gluten-free diet, I am at the very least NCGS/I, but at least I will know if I have celiac disease or not. I would encourage you to get copies of the lab tests and see them for yourself. If you don't understand something on the test, ask your doctor to explain it. If that doesn't work, there are people here on the forums that can give you some thoughts on the results.

Good luck to you...hope you feel better soon, and hope you get answers.

Another lifetime sugar addict who can now eat sweets in moderation.  I figured that my body was craving the fastest energy it could get, since it wasn't absorbing the nutrients from the food I was eating.  

Not that I'm the picture of self-denial, but I actually passed up a BUTTERFINGER today, simply because I didn't want it.  Unheard of!

WOW... I hadn't thought of that! I have been a sugar addict for ever... and never could understand why... now it makes more sense. I sure hope I have the same results... less sugar craving would be wonderful!  As I "study diligently" for my test on Monday... my "study materials" of choice today... rich gooey chocolatey brownies with home made chocolate butter frosting... SINFUL! I feel like tonight is "The Last Supper!" LOL     

I've just started a gluten challenge in order for my doc to run an accurate IgA and TTG blood test. I've been gluten free for 10 months prior. My GI doc said I only had to eat gluten for 1.5-2 weeks. However, everywhere else I've read it can take 4-6 weeks. Which is true?

Hi Kathryn, I posted a reply to your question last night, but I must have just hit the preview button, instead of the post button. I do know that Mayo Clinic, Dr Joseph A Murray, head of Celiac Research at Mayo suggests 4 weeks gluten challenge consuming the equivalent of 4 slices of wheat bread per day. If at four weeks, the test is still negative, he will retest up to 6 months, but not longer. Here is a link to a rather technical video that was made for other doctors, but it has some very helpful info right from the doctor's mouth for you. The gluten challenge is more toward the end of the video, and he specifically tells you how long and how much. Hope this helps. http://www.mayomedic...ndex.html  Good luck with your challenge, I think its good that you're doing it.

My name is Kathryn and I've been gluten free for 10 months after a positive IGG test. I opted not to do the biopsy, and instead went completely gluten-free. I immediately felt better without gluten, but now I'm developing other symptoms that the GI thinks might suggest Crohn's.  This GI is new and didn't do the igg blood test. He doesn't trust the reliability of that blood test, and wants to do the endomysial antibody IgA and TTG. For those, I need to start eating gluten again, which I'm dreading. I've already eaten my first gluten meal (pizza) and already been bloated, nauseous, and just ill. My doctor told me I only needed to eat gluten for 1.5-2 weeks in order for the antibodies to show up. However, I read online that it can take upwards of 1 month. Which is true? How long do I have to eat gluten to ensure the accuracy of the test? How much gluten do I need to eat each day?

Hi KathrynL,

So sorry you have to face a gluten challenge. I know you can hear many different versions of what that entails, and even different doctors seem to give different answers, but this video clip is Dr Joseph A Murray, head of celiac research at Mayo Clinic, Rochester, MN. It's a bit technical and really directed toward doctors, but if you watch it, he will tell you what the gluten challenge consists of timewise, and if at that time the tests are negative, he will give it up to 6 months, but not longer than that. Typically, I believe he says equivalent of four slices of wheat bread per day for 4 weeks for the test to be positive...but up to six months if it shows negative at the four week test point. http://www.mayomedic...ight/index.html

This video also explains why some positive biopsies may be false positive. The part about gluten challenge is toward the end of the video.  Good luck ...hope this helps.

I saw a new doc that seems promising.  Found in him on the "good doc" list and he was progressive in his attitude about thryoid disease and celiac.   He told me he didnt care about the blood test or the endoscopy (told me to skip it). Said that based on my symptons he would recommend me cutting out gluten immediately.

Good for you nuttmegs17! So good to hear you are having better luck with doc now!  Hope you feel all better really soon.  

Ms. Curious! Okay I totally GET IT NOW! Thank you SO much, that last round of explanation did it. I really really appreciate your taking the time to walk me through it.

In terms of our heritage, I know for sure we are a lot of Scotch-Irish and English and German going back a long long way. Maybe a bit of French in there. There are some other strands from my dad's side I don't know as well, but that's most of it. And my husband, for what it's worth, is very much the same.

Flor, You're VERY VERY welcome... happy to help any time I can. Its a fascinating topic, isn't it?  Your heritage is VERY MUCH like mine Irish, Scotch-Irish, English, German, Dutch. The reason I asked about the German and Dutch, and the allergies, asthma and eczema in your family history, is that I have the same genetic markers that you and your son have, and the DQ6 marker has extremely high ties with Netherlands and Germany, and also with asthma, eczema and allergies, along with the preventative nature against autoimmune disease.

We have a HUGE family history of asthma, allergies, eczema on my dads side, which is the German (Luxembourg), English, Irish, Dutch side and I think I got the DQ6 from him. My mom's side is the Irish, Scotch-Irish, English side and I believe I got the DQ2 from her, although her side is rampant with diabetes, hypertension and gallbladder issues... LOL  Lovely genes all around... huh? So who knows! Western Ireland is most closely related with DQ2/DQ2.5 so I think I got that from my dear sweet mum!   

Your educational path sounds fascinating, as well! You'll have to keep me posted on the associations you find in your studies. I'm a research nerd as well... I can't seem to ever satisfy my insatiable appetite for knowledge. How weird is that... I love learning..hehehee. Interesting stuff about the differences in your nieces, too! Just goes to show how different we all are, and how things can affect us so differently. Hope your son stays well and you too!

Anyway, it was a fun discussion, and hopefully helped a bit.    Stay in touch!

Yea I didn't consider testing either until my blood and biopsy diagnosed DD had hers done and was told her diagnosis was false. Since not all celiacs are automatically tested for genes on diagnosis I think there are a lot more than just the two most common that are associated with celiac. Doctors just don't realize it yet.

I think that's true Raven. From the reading and research that I've done, they have found instances of suspected celiac association with other genes, but it is not common, and the testing still goes on. I don't believe that just because the population carrying those genes is very small... makes it any less critical or important. You're one of the more rare celiacs that are definintely out there. Many more people carry the two common genes, so more research has been done to confirm their association with celiac, and that is helpful to many many people. That doesn't however, discount the importance of the less known genetic influences. They'll find them all eventually... it just takes time, and just by nature of the beast... the most predominant factors are studied first.

Anyway, our Enterolab results, my son's and mine, were identical:

HLA-DQB1, Allele 1 0201

HLA-DQB1, Allele 2 0603

Serologic equivalent: HLA-DQ 2, 1 (subtype 2,6)

I gather that "0201" is the celiac allele and the "0603" is the gluten sensitive one.

As far as I know DQB1*0603 has no relation to celiac disease, and in fact may have preventitive properties to autoimmune diseases... that's GOOD news!  

Curious, by the way... do you happen to be of Dutch or German ancestry? And is there a lot of asthma, allergies, hayfever or eczema in your family history? No need to answer if you don't want to, just curious for a couple of different reasons, one being... it appears that I have the same genetic markers as you and your son. (I'm assuming the Irish... am I right?)  

Oh my goodness MsCurious this is all fantastically helpful and you are so deep into it I can barely follow you! I will go read that wikipedia stuff. I really am interested in understanding it.

In both your quoted excerpts here I don't understand what this means: "This isoform is partially encoded by the DQB1*02 genes in HLA-DQ2 positive individuals." I don't know what partially encoded means and I don't get how to read the DQB1*02 string.

Is this saying 1. that people with the 0201 in their beta strand (which my son and I have) will usually also have the 0501 in the alpha strand (and this is info that Enterolab doesn't provide because they only give the beta strand info)? and that 2. therefore people with the 0201 isoform have "the single highest genetic risk" for getting celiac disease?

Thank you thank you for hanging in there with me on this!

I hadn't read anywhere the data about DQ2 homozygotes having lifelong risk of 20-40% for getting celiac so that's really interesting. My son and I are DQ2 homozygotes? That means we have one version (isoform?) of the DQ2 (ie, 0201) allele but not two copies of it?

If I'm understanding that right then it seems like someone like my son who is related to me who DOES have celiac disease and he has the 0201 isoform that that would put him at two higher-risk groups among those who have some kind of genetic predisposition for celiac disease. Does that make sense?

I'm must confess I love the science of genetics, and since it hits home with me and my family a little bit, I've been like a sponge studying this topic a bit. I'm no expert by any stretch of the imagination, though. I'm happy to help de-mystify if I can though... because it is rather confusing sometimes.
To simplify things for you.... lets start at the top. You said your son's results were as follows: (please correct me if I'm wrong)

HLA-DQB1, Allele 1 0201

HLA-DQB1, Allele 2 0603

I think you said you had Enterolab (I've heard questionable things about some of their testing... maybe its cutting edge, maybe they're reaching for $$$ ... I don't know, but I think their genetic testing is accurate from what I have heard). Someone posted somewhere that this particular lab doesn't send the alpha findings, but the DQB1 alleles you have there are distinctively genetically linked to specific DQA1 alleles, as follows:

HLA-DQA1*05/DQB1*0201  carries the "nickname" DQ2.5 ... and that is most probably what your son has. I'm not certain, but I believe that those two alleles are always associated together. There is another DQB1 allele that is also associated with this same DQA1*05 marker... don't quote me, because I'm going from memory but its something like DQB1*0202 and those two together make DQ2.2.  

DQ2.5 is the second highest risk factor to the possibility of celiac... the first being "a first degree family member having been diagnosed with celiac disease".  

This HLA-DQA1*05/DQB1*0201 marker if received in its entirety from one parent is cis-haplotype isoform, while someone who received one allele from each parent (DQA1*05 from one parent and DQB1*0201 from the other parent) has trans-haplotype isoform. (this really doesn't matter other than... with the trans there is less risk for other members of the family to be affected.) The isoforms are the two pairs of alleles that are genetically linked ... as in HLA-DQA1*05/DQB1*0201 <--- this example.
His other genetic marker could likely play out as: HLA-DQA1*01/DBQ1*0603 which I believe translates to DQ6. Don't hold me to that, but those two alleles are genetically linked as well, and that would be a typical pair.

At any rate, your son is DQ2 positive. The other marker (DQ6 from my best guestimation) really doesn't relate to celiac disease as far as I know, and actually carries preventative properties to autoimmune disease, which may protect some people a bit from getting celiac disease even if they have DQ2.5... or at least perhaps prolonging the onset. (This set happens to be the same as me... maybe we're related!)     

I hope I haven't confused you more. Let me know if I can boggle your mind some more..lol    Its just a fun thing... that I enjoy.   Again... I'm no expert... those are just "Dr MsCurious' findings" ... like cassP's.  

i think in some ways- im a very smart person.. but i think its obvious i am not going to become a Geneticist  

i mean- i can understand all these links & risks & symptoms better than most of my docs- but those dang numbers & letters u guys are posting are hurting my brain  

my brain just does fine with only the "subtype" numbers

You do great! I just stumble around with it too.  

Do you know which DQ2 genes are more strongly associated with celiac or where I might read more about that?

Hey Flor, Here is a tidbit that "sort of" answers your question:

"DQ2 represents the second highest risk factor for coeliac disease, the highest risk is a close family member with disease. Due to its link to coeliac disease, DQ2 has the highest association of any HLA serotype with autoimmune disease, close to 95% of all coeliacs have DQ2, of that 30% have 2 copies of DQ2. Of the DQ2 homozygotes who eat wheat, life long risk is between 20 and 40% for coeliac disease.

The relationship of DQ2 and coeliac disease, however, is complex because there are multiple DQ2 isoforms. The DQ α5β2 (DQ2.5) isoform is strongly associated with celiac disease. This isoform is partially encoded by the DQB1*02 genes in HLA-DQ2 positive individuals. DQB1*0201 is genetically linked to DQA1*0501 forming the DQ2.5 haplotype that encodes both α5 and β2 subunits. The DQ2.5 haplotype confers the single highest genetic risk for disease, however comparable risk can also come from very similar alleles on different haplotypes."

If you want to get really technical and understand the inner workings of the HLA-DQ Serotyping System specifically related to DQ2, a good starting point is here:

http://en.wikipedia.org/wiki/HLA-DQ2  Hope this helps with some of your questions and confusion. I know it can be very confusing.