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New And Needing Some Help :(
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8 posts in this topic

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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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.

Because

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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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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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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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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

http://www.celiac.co...celiac-disease/

Newbie Info 101

http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?

http://www.celiac.co...reakfast-today/

What Did You Have For Lunch Today?

http://www.celiac.co...or-lunch-today/

What Are You Cooking Tonight?

http://www.celiac.co...ooking-tonight/

http://www.celiac.co...399#entry802399

How bad is cheating?

http://www.celiac.co...t-periodically/

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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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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.

Cara

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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