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New And Needing Some Help :(

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Posted 18 July 2012 - 09:32 AM

Blah...here goes...

I was VERY recently deemed "gluten sensitive". I was sick with a pretty bad virus which left me running fever for 6 days. This led to a lot of bloodwork, which indicated that my c-reactive protein was high. (marker of inflammation) Doc suggest I get tested for food allergies...and hello gluten sensitive. I am not allergic to wheat according to the allergy screening. He said the gluten test was a 'pass/fail' type thing and my test came back 'positive'. On the bloodwork it simply says "Gluten Sensitivity Test TTG/DPG". No idea. Also, my thyroid came back a bit out of whack, which he said was probably the gluten. He told me to eliminate gluten and we'd test my thyroid and CRP in a few months. The end.

I have an inquiring mind, so I made an appointment with an allergist for next Thursday. They said to re-introduce gluten back into my diet for the tests.

I don't even know what my question is here - just help. In my perfect world, it was a false positive and I can enjoy a big slice of pizza with a beer at the end of all this...but I don't believe that will be true. I've never had any symptom of any kind of intolerance. No fatigue, or any GI weirdness.

Does anyone know what the allergist will do? Please tell me no intestinal biopsy...

I just don't know where to go from here. HELP!!!
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Posted 18 July 2012 - 10:46 AM

Ok, first of all...
TTG and DGP are both celiac blood tests. You need to ask your doctor for the actual results, along with normal ranges, and post them on here. There is no reliable testing method for gluten sensitivity or intolerance currently. It is trial and error.

Now, if you have positive TTG and DGP then you have celiac disease. The DGP in particular is highly sensitive for celiac.

Celiac is an autoimmune disorder, not an allergy. Now, you can have a wheat or gluten allergy, in addition to celiac...but one has nothing to do with the other.

An allergist can only test for IGE allergies, not celiac. Not gluten sensitivity. No matter what they might tell you.

What I can tell you is that right now you have no real answers.

Start eating gluten again, immediately, and do not stop until all testing is done to rule out celiac disease. If you are not eating gluten, you will get a false negative.

Now, if it turns out your bloodwork was positive for celiac, you don't necessarily need an endoscopy. A lot of doctors adhere to it being the "gold standard" for diagnosing celiac, but the newer blood tests are so specific that it isn't always necessary, though it can be beneficial to know what state your intestines are currently in. If you do have an endoscopy, don't sweat it. It is an easy out patient procedure, not a big deal at all.

As for your thyroid...yes, gluten can certainly affect it. When all of your testing is done, whether you are dx with celiac or not, you should definitely go gluten free and see what happens.

Gluten sensitivity or intolerance is extremely common, and at least your doctor is aware of the fact that it is a real issue. Many do not. But you need to definitively rule out celiac disease before you accept a dx of "gluten sensitivity." Celiac is genetic, and if you have it, your other family members need to be tested. Because it is autoimmune, you will be at increased risk for other ai disorders as well.

Welcome to the boards. Please take your time looking around. You will learn a lot here.

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Posted 18 July 2012 - 11:08 AM

Thank you...very much. I feel completely blind in all of this.

Do you think it is worth going to see the allergist? Should I be seeing a GI doctor? I haven't a clue who to see at this point.

A nurse at my doctor's office is gluten intolerant and she went and had genetic testing done and recommended that. She said she learned she could also not eat corn, which is something they don't usually test for? She also said she learned she had a genetic predisposition for celiac...but that she did not get tested for it, since she already knew she couldn't eat gluten. Not sure if I should go ahead and do the allergist thing or not.

My grandmother's sister has celiac, and so does her son. So, I would say it's in my family, but no one in my immediate family has it...that we know of. My aunt and brother are both considering getting tested as they have some issues that could be related.

Thanks again for your help.
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Posted 18 July 2012 - 11:46 AM

Right now, get a complete copy of your labs, post them here. It is difficult to advise you without knowing for sure what they say. If the labs are negative for celiac...the allergist might be worthwhile. Commonly, celiac and gluten intolerance will trigger other food intolerances. Once you remove gluten from your diet, many food sensitivities will likely go away. Not always, but often.

With celiac in your family, I would say there is a high likelihood that is what you are looking at though.
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Posted 19 July 2012 - 03:31 AM

My grandmother's sister has celiac, and so does her son. So, I would say it's in my family, but no one in my immediate family has it...that we know of. My aunt and brother are both considering getting tested as they have some issues that could be related.

Thanks again for your help.

You have celiac in your family and you have had positive blood work including one of the tests that are the most reliable. I would ask the allergist what testing he wants to do that requires you to keep eating, or go back to eating gluten. Celiac is not an allergy and will not show up on allergy testing. If you are not going to have a biopsy done then personally I would just get on the diet. It sounds like you have a good doctor but you should get your test results to have for your records.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)

celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom

Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)



    A little farting never hurt anybody... :-).

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Posted 19 July 2012 - 04:48 AM

Welcome Adrienne! :)

Celiac disease is an autoimmune condition. The blood tests they do measure antibodies to gluten (gliaden).

There is an autoimmune thyroid condition that is often associated with celiac disease called Hashimoto's Thyroiditis. You can get a test for thyroid antibodies done, I believe it is called TPO antibodies. We have quite a few threads on Hashimoto's here. An endocrinologist is a specialist in endocrine function and could test you for Hashimoto's if your regular doctor won't.

As you may realize now, celiac can affect many parts of the body besides the gut. People get arthritis, diabetes, and many other auto-immune diseases that are associated with celiac. Dermatitis Herpetiformis is a skin rash that only people with celiac get, So it can affect any part of the body including joints, hair, skin, brain, nerves muscles etc. Celiac also can cause mal-abosorption of vitamins due to gut damage. That leads to a whole slew of problems in various areas of the body since it can't maintain itself without the vitamins it needs.

This all sounds pretty scary but the good news is that with a strict gluten-free diet the problems can be prevented in many cases or even eliminated in some cases. But the gluten-free diet is very important to prevent additional damage to the body.

Here is some reading material that may help.

FAQ Celiac com

Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?


How bad is cheating?
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul



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Posted 19 July 2012 - 08:49 PM

I had my testing ordered by my allergist after doing some research. She was happy to order the lab tests (Celiac panel), but she couldn't do anything for me beyond that. I would go see a GI doctor. He has been the most knowledgeable for me! After my lab results came back positive, I did have the intestinal biopsy. It was a VERY easy procedure!!

Good luck!
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4/2012 - Odd rash appears
5/2012 - 3 out of 5 positives on Celiac blood panel
5/2012 - Skin biopsy - negative for DH - possible lupus???
6/2102 - Intestinal biopsy - positive
Gluten free since 6/2012


Cara in Boston

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Posted 20 July 2012 - 04:24 AM

It sounds like you may have had a blood screening for Celiac Disease and you tested positive.

celiac disease is much more serious than a "gluten sensitivity" in that cheating on the diet is NOT an option. (If you were just intolerant, you could cheat and just suffer the uncomfortable consequences) With celiac disease, you have an autoimmune condition that is triggered by gluten. Continuing to eat gluten can result in permanent damage, developing other AI conditions, and even cancer.

I would FIRST try and find a good celiac doctor in your area (google to see if there is a celiac disease support group or somewhere you can get advice) and start there. You may or may not need an endoscopy, so don't change your diet just yet.

The chance of a "false positive" is unlikely. While you are waiting for further testing, start learning about the gluten-free diet and scope out your grocery stores for products you might like.

All first degree family members need to be tested - even if they have no symptoms.

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