New To Forum, Waiting For Results, Etc...

[LoveLife]

Hi Everyone!

I

[Ridgewalker]

Welcome to the forum!

I'm no doctor-- but to me, the fact that you and your daughter BOTH have symptoms make it more likely that you both have Celiac. It's much more hereditary than official studies show.

I'm glad that you decided to go gluten-free no matter what the biopsy shows. It sounds like your gastro doc knows his stuff, but even when taking multiple samples the damage can still be missed. And of course, the results are subject to human interpretation. Furthermore, no one knows how "advanced" a case of Celiac must be to show up as visible damage to the intestinal villi.

Also, keep in mind that if you decide to have your daughter tested, the tests are even less reliable in children.

(Can you tell that I am rather dissatisfied with the current standard testing methods for Celiac? ) Dietary response, or lack of which, can tell you a lot.

A few things I wanted to note...

Low-grade fever isn't a super common symptom of Celiac, but it's not at all unheard of. In fact, my oldest son ran a low-grade fever every single morning for the whole month before I put him on a gluten-free diet. And speaking of Lucas, he also frequently complained of leg pain, which I mistakenly put off as growing pains. He was 6 years old at the time. Both of those symptoms (among so many others) went completely away after he went gluten-free. They only come back sometimes when he gets "glutened."

Many people here have suffered from back problems. Many of us (including myself) have been diagnosed with degenerative disc disease. I was dxed with it at age 18. I had herniated discs at age 22. Interestingly, I have had only mild problems with my back since I've been gluten-free. So far, I've not had a single severe episode of the excruciating pain that used to leave me unable to walk.

I'm glad that you found the forum, and I hope you stick around. This is the absolute best place to learn about Celiac and living gluten-free.

[Guest Talia]

Hi Everyone!

I

[Guest Talia]

Hi Everyone!

I

[happygirl]

Thanks for sharing your story!!! Please stick around and make yourself right at home. Happy that you found this resource.

PS---nothing is ever too long. don't worry

[LoveLife]

I now hope I'm replying correctly. I'm not sure if I just deleted my original post - guess I'll soon find out.

Thanks everyone for replying.

I got the results of my biopsies and they were negative. The gastro doc does not think I have celiac, but he said if I follow a gluten free diet, he'd be curious to know if my vitamin D level goes up without the mega tons of D supplements (who knows what other levels may be down - never had a full vitamin screening).

He gave me my results by email and I've requested my full report (which on my discharge papers said would be mailed within 2-4 weeks).

When I emailed back with a few questions, he said it was too many questions to answer by email and I would have to come in to discuss. I'm not. He had previously mentioned that if I had an intolerance/sensitivity, that would have to be checked by an allergist.

I called an allergist today and he said he does not check for that (the office didn't sound very informed about that type of testing). He also said he only does skin tests and it sounds like I would need to see an endocrinologist (been there, done that).

Talia, you mentioned an allergist helped you. What exactly do they test (what do I ask for when I call the office)? Can anyone give some allergist info?

I figure I'd try this route before going gluten free (I know that's a big step). I'm assuming this would be the last type of testing that would require me to be on gluten to get somewhat accurate results. Once I go off the gluten and if I get good results, I don't want to go back on it for further testing.

I'm getting tired and frustrated of medical stuff, just want to go about "loving life," which I really still do - I have a great daughter and great husband! I guess the other "stuff" are just more challenges.

Thanks, and have a Gr-8 day everyone!

[babysteps]

I called an allergist today and he said he does not check for that (the office didn't sound very informed about that type of testing). He also said he only does skin tests and it sounds like I would need to see an endocrinologist (been there, done that).

Talia, you mentioned an allergist helped you. What exactly do they test (what do I ask for when I call the office)? Can anyone give some allergist info?

My primary care physician was able to order allergy blood tests along with the celiac blood tests. I think it ended up being 3 or 4 vials of blood at the local testing site (Quest is the brand of testing service)...so for the test alone, you may not need an allergist? But I can see it *would* be nice for you to find (an informed) one for advice.

You may also want to check out the lyme disease thread on this forum or elsewhere (based on joint, energy and temperature issues) if you haven't already been tested for that.

Good luck, hopefully you are close to knowing more and/or finding your own diagnosis!

[lizard00]

Welcome to the Board!!!

Two things:

I also echo the PP's suggestion to check out the Lyme Disease thread. There are a few on this board who were dx with Fibromyalgia and later found out it was Lyme and not fibro. Sometimes I wonder if I have it...

Second:

A gluten allergy and a gluten intolerance are two separate things. An allergy would produce a histamine rxn, much like an allergy to cats, dogs, eggs, etc. An intolerance and/or Celiac (I say that since the debate is whether the two are one in the same) involves the intestines and response with your immune system. Either way, the treatment is the same; avoid it.

Going gluten-free seems like a daunting task initially, but you quickly adjust. Especially if that is, indeed, your problem. I started to feel better almost immediately. I didn't feel great right away, but the most noticeable thing was that my headaches went away. It all takes time to heal and feel better, but it is so worth it.

[horsesjapan]

When I emailed back with a few questions, he said it was too many questions to answer by email and I would have to come in to discuss. I'm not. He had previously mentioned that if I had an intolerance/sensitivity, that would have to be checked by an allergist.

I called an allergist today and he said he does not check for that (the office didn't sound very informed about that type of testing). He also said he only does skin tests and it sounds like I would need to see an endocrinologist (been there, done that).

Talia, you mentioned an allergist helped you. What exactly do they test (what do I ask for when I call the office)? Can anyone give some allergist info?

What you probably want to request is an ELISA or RAST blood test (I'm not sure of the difference) to check for IgG reactions to foods. They can test IgE via RAST (not sure about ELISA, we haven't dealt with that) as well, so you might have to specifically request IgG. You might want to start with the main allergens (wheat, soy, dairy, egg, peanuts, tree nuts, fish) unless you find a doc willing to test as much as you want!

Are you sure your doc ran all the correct blood work? Mine didn't, they didn't do a tTg A and a Total IgA. I did come up positive on the IgG gliadin test though. I'm waiting for my referral to the GI before I go gluten free. If I were you, I wouldn't try gluten free till you are done with testing. Once you decide you've tested all you want to test OR you give up trying to get someone to test you (yes, it is frustrating, took 6 years--granted I wasn't pushing and looking the whole time but still-- to find someone to RAST IgG test my son, who it turns out reacts to wheat, dairy, soy, egg, and malt) then go gluten free and see how you feel. There is always enterolab if you don't trust your docs results once you get them. And 2-4 weeks???? Can you not go in and get a photocopy??? Nuts I say!

Good luck, and definitely pursue other things like the last couple people mentioned.

Nancy

[LoveLife]

Once again, thanks for the responses.

I went back and looked at my form of what lab work was ordered and my lab results.

It looks like maybe they didn

[LoveLife]

Hi Again,

A couple of other things I

[happygirl]

The tTG IgA and EMA IgA tests are the most sensitive/specific tests for Celiac. However, you can get a false negative if you are IgA deficient. You may want to ask your doctor to test for the "total IgA." (If you are IgA deficient, you won't be able to test positive - if you have it - for Celiac using the IgA tests).

for more info on blood tests/IgA Open Original Shared Link

You can ask your doctor to run the genetic profile for Celiac. The two identified genes are HLA DQ2 and HLA DQ8. Keep in mind that about 30+% of the American population has one of these genes, so just the presence of the gene does NOT mean you have Celiac. (30% of pop vs. 1 in 133 Americans that have Celiac). Also, a small percentage of people who don't have the gene do have Celiac. There is increasing research out about other genes that are/may be linked to Celiac.

[LoveLife]

Hi Everyone,

I had emailed my PA (I like him very much and again, he listens to what I have to say) from my internist

[babysteps]

wow, sounds like you are seeing immediate change!

strange things can happen as you basically de-tox, so don't be surprised by some initial ups & downs. I swear my body got stronger, so for a while it was also a bigger reaction to getting rid of any toxins still left and/or newly introduced.

are you avoiding dairy? I had never been sensitive but the first few weeks gluten-free I did avoid (after some signs the first few days that dairy was an issue) - then I was fine. I do still react to "natural flavors", maybe that will change eventually but for now, better safe than sorry!!!

if joints are a particular issue you may want to consider 'testing' nightshades to see if that is an issue, for some on this site they turned out to be a secondary source of joint pain to gluten.

good luck!

[LoveLife]

Hi!

I'm going to the doctor Wednesday (it's now Sunday) for something completely unrelated, but making me extremely nervous/anxious.

Anyway, while I'm there and knowing I'll get a slip for my Vitamin D and Calcium levels to be checked (and the possibility of checking other stuff), I figured now I'll get everything checked that I mentioned in my previous post (complete labs for celiac, the current genetic labs done for celiac, ELISA panel to check for sensitivity to gluten, soy, dairy, eggs, peanut, etc - the common things and even Lyme).

Here's the question: If I've been gluten free (except possibly unintentially) for 5 days and now begin eating gluten again until after my tests (I'll be eating gluten for at least 3 days before the labs), that shouldn't have an effect on the results, right?

Thanks.