leadmeastray88

Unfortunately, you're in a bit of a pickle.

5 weeks gluten free may have been enough to change the antibodies in your blood. Even if you cram gluten down your throat for a week, there's a chance your bloodwork will be a false negative.

5 weeks may have also been enough to heal your 'flattened mucosa', although everyone heals differently.

I really don't know what to suggest, although if a clinical diagnosis is important to you then it may not be too late. If you do want to pursue testing you should be eating the equivalent of 4-6 slices of bread per day for 6 weeks, (I think is the recommended intake) and then do the bloodwork. A week isn't long enough.

Hopefully that helps, someone else will probably chime in soon too.

Best wishes!

I find whenever I get glutened, I feel better when I take an anti-spasmoidic pill (I get severe stomach cramps) that is gluten-free of course, Buscapan is gluten-free. My doctor prescribed it for me.

All of the other suggestions are great too - hot tea, lots of water, heat packs, a lazy day...all sure to help you feel better.

Yes!!

I know when I've been glutened because I get really painful canker sores. It's the tell-tale sign for me.

Jason-

Have you ever heard of Zija?

www.drinklifein.com

Its an amazing natural supplement drink - tastes like green tea - not only helps with nutritional deficiencies it also sooths your gastro tract and aids digestion.

I have tried it and love it. Maybe it will help you?

P.S. I swear I'm not affiliated!

Hi all,

My PCP ordered a quantitative immunoglobulin panel for me last week. My IgA, IgG, and IgM levels are all normal, which supports the negative Celiac blood work I recieved. Nevertheless, I'm keeping my appointment with the gastroenterologist on thursday. Celiac or not I still have chronic GI issues that need investigated and an endoscopy is probably in order anyway. Could always have a positive biopsy despite the negative blood work, but more likely there is something else afoot and hopefully we will find it.

LIS

That's great LIS_Guy, I hope the endoscopy reveals some answers for you!

HLA-DQB1*0301 is the HLA haplotype frequently associated with autoimmune thyroiditis.

From this research:

Open Original Shared Link

Wow! Thanks for this Shay, I have HLA-DQB1*0301 so I will be getting my thyroid tested next week (hopefully)!

Many thanks!

Thanks so much guys for your replies

Quick question:

HLA-DQB1 Molecular Analysis, Allele 1 0202

HLA-DQB1 Molecular Analysis, Allele 2 0301

Serologic equivalent: HLA-DQ 2,3 (Subtype 2,7)

What does the "subtype" mean? 2 and 7, does that mean I am DQ2 and DQ7?

"Within the group of patients with neurological disease and gluten sensitivity (defined by the presence of anti-gliadin antibodies) we have found a similar HLA association to that seen in patients with celiac disease: 70% of patients have the HLA DQ2 (30% in the general population), 9% have the HLA DQ8, and the remainder have HLA DQ1.

I'm wondering HLA DQ2 what? DQ2 in general or are there specific DQ2s that associate with the disease?

UPDATE:

Dr. Fine and I have been emailing each other back and forth all day.

He has noted that a couple of months ago they discovered that DQB1*0202 can exacerbate the effect of an associated 0201 gene, and/or is also present in about 1% of Celiacs. He said they will be making the distinction in the coming testing.

Still, the litterature Jestgar provided seems to suggest it is more common than that. I'm thinking I'll get Kimball testing to test for the alpha portion of the gene.

here is another great looking recipe: Open Original Shared Link

i was planning on giving this one a try i quit going to starbucks a few months ago because i got sick about 50% of the time

That's so great! Thanks!

Here is what you get when you search pubmed. Some of the articles are free, others you may get access to at a university library.

Open Original Shared Link

Thank you so much - all of those articles were so helpful.

I forwarded the link to Dr. Fine so it'll be interesting to see what he says

I've been so curious about genetics lately, reading all the gene threads on here, especially since finding out on Kimball's website that DQB1*202 can be associated with Celiac if encoded by alleles DQA1*0501 or DQA1*0505.

I tested with Enterolab and they found DQB1*0202 and call it a "gluten sensitive gene".

I e-mailed Enterolab and asked how they can possibly rule out that DQB1*0202 is not a Celiac gene when they do not test for the alpha part of the gene - Dr. Fine e-mailed me back personally and said "he would need the scientific literature source of this information from Kimball genetics", as he is certain that that gene does not predispose to Celiac.

So my question is this - do any of you genetic buffs out there know of any scientific literature that disproves this? I know it states this directly on the Kimball site but I'd like a piece of medical literature if it is at all possible, or maybe point me in the right direction? I have no clue how to go about researching this.

Thanks in advance!

If your mom has the celiac gene/s, then yes, you have a 50% chance of having the gene.

If you have the gene, you are more likely to have it than not. Some people need a 'trigger' for their bodies to start reacting and showing symptoms.

I'm not an expert on genetics but I'll bet someone else will chime in soon.

Good luck!

Welcome!

Yes, those symptoms could definitely be pointing to Celiac. The problem is that the symptoms are so vague that they can also be attributed to many other ailments.

Which blood tests did you have run? You should get a copy of the results and post them here. Some doctors don't order the full Celiac panel:

IgA

IgG

tTG

Total IgA

If then all the results are negative, you could see a gastro and request an endoscopy with multiple biopsies. Only then should you try a strict gluten free diet for a few months and see what happens.

Good luck!

-Kim

Yes there are many people who have posted here that have tested negative on Enterolab.

I don't think you should be so surprised that your DH tested positive, I have two gluten sensitive genes so that means each of my parents carry the gene. Coincidence? No, it just so happens that they each carry the gene and married each other. I poke fun at them and say they're a recipe for disaster As of yet, neither of them have symptoms but could very well have gluten sensitivity. My mom is thinking about getting the Enterolab test to see, even if she doesn't have symptoms. So it's not impossible, thats for sure.

And who's to say your husband wouldn't have started showing symptoms maybe even a few years from now? Maybe you just caught it early, or he didn't have a 'trigger' to make him start showing symptoms? My trigger was surgery. I've had the genes all my life but they waited until 3 years ago to make their appearance.

Celiac is tricky. There's so much we don't know about it, and I don't question the validity of Enterolab testing, I see it as another research method that is continually gaining new data. It has supported many of the symptoms that people present and there are many here who test positive and respond well to the diet. Isn't that the most important thing?

I hope you're all on your way to better health

I agree with happygirl.

The tTG antibodies are very specific to Celiac, so you should definitely go for the biopsy to confirm.

No matter what the results are, you should try a strict gluten free diet for a few months and see if your symptoms improve. Don't go gluten free until after the biopsy though! Otherwise you may get a false negative. Your symptoms definitely sound suggestive.

Good luck!

Ah man! It sounded good too! Thanks for the warning though!! I am sorry about getting sick. (my name is kim to!)

Nice to meet you!

Here we go: Open Original Shared Link

Not gluten-free:

Any frappachino with "chips" (Java Chip or Chocolate Chip)

Cafe Vanilla Frappachino and Vanilla Bean Cream Frappachino. These both contain the Vanilla Bean Powder, which is produced in an area that also produces gluten-containing items. The uncontaminated Vanilla Bean Powder would be gluten-free, according to the rep.

Eggnog drinks These are only on the menu during the holiday season. They may or may not be gluten-free, depending on the local suppliers.

All other beverages are gluten free (as long as they don't have any of the "chips").

Note: Although Starbucks routinely rinses pitchers after each drink is made, the customer service representative said gluten-free customers can request that the pitcher go through a sanitizer before their drink is made

Thanks so much for this info - so helpful!

I work at starbucks, and i can say it was most likely from the steam wands. we wipes them off after each use but we dont scrub them or anything. also the spoons, ect. Or it could just be that it was to much sugar, there is SO much in that latte, the pumpkin spice is one of our worst

Is it possible to request to sanitize the steam wands? This is good info coming from someone who works there!!

I got beat to hell and back by the pumpkin spice too. It was from another coffee shop but I think Starbucks uses Torani in their blend. Their website claims that the pumpkin spice is safe, but I went STRAIGHT TO HELL after that latte.

Ohh boy! Well thats exactly the way I felt too so I guess I'll take it from you to not take that chance ever again!

Thank you for all your responses.

Momma-

I can't pinpoint if there was another possibility that I had gotten glutened during the day, I never eat out and only make my own food. Starbucks is pretty much the only place I go to buy anything I consume and it's always the same thing and I've never had a problem until now.

Bea-

As for the caramel coloring, I don't remember where I read it but I read that it is safe if it was made in Canada and the U.S. You're still having problems?

Shay-

Interesting. Although I don't know what else would have caused the reaction other than the caramel coloring, and if thats safe, I'm stumped

I was doing a Starbucks run a few nights ago on my way to my boyfriend's house, and decided to pick a Pumpkin Spice Latte. I've been going there for a long time, and looking at the other latte ingredients I thought this one would probably be safe.

I think I was wrong. About an hour later my stomach starting hurting really bad and then the gas came and I spent a while in the loo. We were going to see The Dark Knight at IMAX with some friends, so I went anyway despite feeling so crappy. I FELL ASLEEP! Who falls asleep during The Dark Knight???

I called the Starbucks hotline and the only likely culprit seems to be the caramel color. I thought caramel color was okay in Canada and the U.S.?

Just wanted to give everyone else a heads up, or if anyone else knows something I don't please let me know!

-Kim

I had the Enterolab testing done and my results were positive as well.

I had a negative tTG blood test prior so when the GI refused to scope me, I had no other option.

Enterolab supported what my doctor and I believed already to be true - that I had a problem with gluten. Whether it is Celiac or just gluten sensitivity/intolerance doesn't matter, the treatment is the same. And I have had amazing results.

Hi Tamito,

The previous poster is right. Celiac is an autoimmune disease and if you were diagnosed years ago, then yes, you still have it. And if you think about it, you DO have symptoms: thyroid, headaches...those are all typical of Celiac.

You can't outgrow Celiac. Just because you are not 'feeling' any gastro related symptoms does not mean you aren't doing damage. If you continue to eat regular food, you are putting yourself at risk for many other autoimmune diseases and thyroid problems, which you already have. You don't want to add diabetes, cancer, etc. to the mix!

There are many Celiacs who are "silent" before diagnosis, that is they don't experience any symptoms.

If you need reassuring, I highly suggest you re-do the testing for peace of mind. Only after that should you go on a life-long gluten free diet.

I feel for you , and I hope you find peace of mind soon! Welcome to the forum!!

-Kim

He said that the B12 deficiency is not a symptom of celiac, although pretty much all of the literature I've read lists it a a symptom. I really don't understand why he thinks I definitely don't have celiac!?!?!

Yeah, don't believe that for a second.

Me being B12 deficient is what helped lead my GP to Celiac.

Don't be too hard on your gastro, like people here have said it's so hard to find a doctor who will actually listen nevermind actually run the tests - and he is running the tests for you so I think you should wait and see what happens. No you don't need a colonoscopy for a Celiac diagnosis but it'll definitely rule out other things.

If you think your doc really doesn't believe you and then you get a positive biopsy, then you can rub his face in it. But until then, you're VERY lucky you have a gastro who's doing this for you!

I know its frustrating but keep yourself optimistic and you will get better!

I would suggest having the complete panel re-done, except add the tissue transglutaminese (tTG) which is much more specific for Celiac, as well as the total IgA which tests for IgA deficiency. Your blood can change in an instant so you should definitely have them re-done.

Not sure about your protein question, maybe someone else here can help.