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#16 beachbirdie

 
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Posted 05 May 2012 - 10:43 AM

My daughter had her endoscopy & biopsy done and the GI said definatly Celiac. He said he would send off the biopsies and let us know if they show something different. What he said seems to go along with what I have read on this forum. I think she may have a doc who knows what he is doing! We also talked about the genetic marker test, hopefully I put that right. When I told him mine was negative and done through Quest, his comment was "there you go" and would prefer Prometheus.

I appreciate any input I have received since this is all new to me and I need to know what to request from my doctor. On to the dumb question... several have said I need more thyroid tests than just TSH. Confused why. I did some reading and I don't see the symptoms of thyroid problems. With Celiac being an autoimmune, wouldn't that be why the ANA is positive? I can say all I have are the above test results, some trouble sleeping but not all the time, floating poo, but definatly better now off gluten, heart palpatations at times but not all the time, hot flashes sometimes. My hair, nails, energy, weight, skin, sensitivity to hot / cold are all normal. What am I missing so I have something to go to the doc with.? In 2011 - TSH was 1.80 miu/l - no reference range and in 2012 it was 2.25 with "normal" being .47 - 5.01 uu/ml.

Thanks again :)



Sjogren's is autoimmune, and you tested positive for that. Your positive ANA is an indicator of ANY autoimmune condition, not just thyroid.

The only way to diagnose Hashimoto's is with antibody testing, they should to both anti-TPO (anti-thyroid peroxidase) and anti-thyroglobulin (TgAb) antibodies.

With Hashi's you can be all over the place as far as TSH levels go. Even in the normal person TSH varies through the day because it is part of a feedback loop in which the body detects the thyroid hormone levels slipping, and the pituitary sends a message to the thyroid gland via TSH (Thyroid Stimulating Hormone) in order to order the thyroid to increase output. The reason it is suggested to have more than just TSH testing is because you have no clue what your actual thyroid levels are. TSH is not a thyroid hormone, it is a pituitary hormone, and testing it is just the "first line" of testing to see if something is off. Since you already have one autoimmune condition (Sjogren's) you may have another. Sjogren's often travels with autoimmune thyroid and celiac.

It is possible to have Hashi's for years before going hypothyroid, and it is still possible to have symptoms even though the labs might say normal.

Did you get a copy of your genetic test? I would be interested to know what it said. Did they mean you had absolutely NO celiac gene, or that you had the lowest risk one? I had a doc tell me I couldn't have celiac because I had the lowest risk gene.

I can't remember if in your other post you said you had a positive TtG IgG. That is a sign of tissue damage and can go with a number of autoimmune conditions. I think you need someone who will take a closer, and more methodical look.
  • 0
1999 - Hypothyroid
2003 - Hashimoto's Disease
2008 - Diverticulitis
2009 - Significant Vit D Deficiency
2011 - Diverticulitis again
2011 - HLA-DQ2.2
2012 - TtG IgG positive... I am now, finally, Gluten Free - 5/16/2012

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#17 Ziva

 
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Posted 05 May 2012 - 12:39 PM

Quess I don't know how to do the mutli quote, yet!

Thanks for the reply. Are you saying that the recent thyroid tests I had done are not enough to rule out Hashimot's? At least for right now.

My test through Quest said: "The patient does not have the HLA-DQ varients associated with Celiac Desease"

As I work on getting my other daughter tested, I might be a little smarter. My TtG IgA was <3. They did not do the Ttg IgG in my blood work. My IgA, quant was "normal" and my antigliadin ab, IgA was 13 - high (11-17 equivocal). My daughter's TtG IgG was 9.3 - high (>9 pos) and it was the only positive she received. They did not run a full panel before she went gluten free. My mistake, when the GI said "classic Celiac" after our initial visit and biopsy, before the pathologist's report, I figured I didn't need to request additional celiac bloodwork. According to our GI docs neither of us have Celiac.
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#18 Ziva

 
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Posted 05 May 2012 - 01:20 PM

How long of a learning curve do we get :) ??? I went back and read some previous responses and it said something about TPO antibody test. Guess I picked up on the T3 & T4 from somewhere else and requested them. So, with my recent thyroid test results, do I need to go back and request more blood work?
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#19 beachbirdie

 
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Posted 05 May 2012 - 01:43 PM

Quess I don't know how to do the mutli quote, yet!

Thanks for the reply. Are you saying that the recent thyroid tests I had done are not enough to rule out Hashimot's? At least for right now.

My test through Quest said: "The patient does not have the HLA-DQ varients associated with Celiac Desease"



:) To use multi-quote, you just click the "multi-quote" button after each post you wish to include. Then go down to the bottom and hit the big "add reply" button. All of the quotes will appear in the reply screen, then you can cut out any extraneous stuff you don't want. Don't mess with the "quote" or "/quote" commands though. Make sure the bracketed "quote" is at the beginning of the quoted passage and the bracketed "/quote" is at the end, or you'll mess up the html, LOL.

You are correct, the tests you had do not rule out Hashimoto's. You don't know if you have it without having antibody testing. I am interested that you have anti-gliadin antibodies, it means your body IS responding to gluten. It just doesn't appear to be auto-immune. My guess would be you have a strong likelihood of being non-celiac gluten intolerant, which is receiving more credible recognition as a separate and valid condition.

Though you do not have the genes typically associated with celiac in the United States, the Europeans look at different genes. The likelihood is low, but not impossible.

Did you have genetic tests done for your daughter? The positive TtG IgG means SOMETHING.

Hopefully someone with a little more expertise will come along and help on the celiac stuff. I have delved deeply into thyroid issues, but am still new to celiac information.

If you improve on a gluten-free diet, then by all means stick with it! Thankfully you don't need a prescription for it, or any kind of doctor's order.
  • 0
1999 - Hypothyroid
2003 - Hashimoto's Disease
2008 - Diverticulitis
2009 - Significant Vit D Deficiency
2011 - Diverticulitis again
2011 - HLA-DQ2.2
2012 - TtG IgG positive... I am now, finally, Gluten Free - 5/16/2012

#20 pricklypear1971

 
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Posted 05 May 2012 - 02:08 PM

Read this to help you interpret Celiac antibody tests http://www.celiac.co...ults/Page1.html

You tested positive on a specific Celiac antibody test. You are anemic and have low b's. Classic lab test results. You also test positive for Sjogren's antibodies but I have no idea if they can come up + for any other reason. They have not tested you for Hashimotos (TPO Ab). You have a positive ana which concurs with autoimmune disease.

You need to get the FULL REPORT FOR YOUR GENE TESTS. Don't read the part where they say if you are positive or negative. Read the part where they tell you what your genes ARE. FYI I have HALF genes and my "summary" says I'm negative but the full report clearly shows I am HALF DQ2 and HALF DQ8.

And your daughter gets half her genes from you and half from Dad. So if she has a full copy anywhere that's where you should look.

Yes, according to serology you are Celiac. You are responding to the gluten-free diet - that's great news. I think I missed the part about your biopsy but did tgey only take one sample???? If so, they could have easily missed the damage.
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#21 Ziva

 
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Posted 05 May 2012 - 04:50 PM

I have read the info on antibody tests several times and understand it a little more each time I read it. Thanks

My generic marker test said what I posted earlier plus
HLA-DQ (DQA1*05/DQB1*02) negative
HLA-DQ8 (DQA1*03/DQB1*0302) negative
HLA-DQA1* 01
HLA-DQA1* 03
HLA-DQB1* 0301
HLA-DQB1* 0603

Does it say something different than negative?
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#22 pricklypear1971

 
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Posted 05 May 2012 - 05:09 PM

You're definitely gonna need Skylark for this one. Try Ravenwoodglass, too.

You are weirder than me. I think.

If im reading this correctly (and thats a big if) you do have a loose affiliation with Celiac - just not the most common genes here in the U. S. - which is why they are saying you're negative. You're high on "autoimmunity" (like me) and your genes are rare (at least in the U. S.).

I'm curious - did your daughter get "common" Celiac genes from her father? You can see his genes by comparing the two DNA tests (or half of his). Half of each gene is from you - the other half is from him.

http://www.ncbi.nlm....ubmed/12391226/

http://en.m.wikipedi...pha_1#section_2

http://en.m.wikipedi...A-DQ7#section_3
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#23 mamaw

 
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Posted 05 May 2012 - 05:24 PM

Your B-12 should be around 1000 range.. I take B-12 weekly injections but for a different reason.. Usually it is for most people monthly...
Sjogren's,,do you have dry mouth, eyes, throat?

It appears that one of your doctor's is a keeper...Hemotologist!!!

Don't let too much info all at once over-whelm you as this can cause some depression.. You will figure it all out but it does take lots & of time.. So work on things that are naturally gluten-free ie: naked meats, veggies, fish, fruits. NO coatings, rubs, marinades, seasoning, McCormick's clearly labels so you can add your own spices at first...

Be glad your daughter got Dx'd at 21.. fertility issues happen alot ....
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#24 Ziva

 
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Posted 06 May 2012 - 08:13 AM

You are weirder than me. I think.

I'm curious - did your daughter get "common" Celiac genes from her father? You can see his genes by comparing the two DNA tests (or half of his). Half of each gene is from you - the other half is from him.


I always thought I was a little weird :)

We haven't done any genetic marker testing on anyone else. I'm not really sure it would be worth it. I only did it because the GI doc said no to Celiac and he wanted it to rule it out further. I guess in his mind it gave him one more reason to say no. Thanks for adding the links, but they were greek to me! My husband was diagnosed as Celiac as a toddler, but until it was mentioned for me, we didn't know you don't outgrow it. His tests came back negative, but he is gluten free with me.
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#25 Ziva

 
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Posted 06 May 2012 - 08:30 AM

Sjogren's,,do you have dry mouth, eyes, throat?

Don't let too much info all at once over-whelm you as this can cause some depression.. You will figure it all out but it does take lots & of time.. So work on things that are naturally gluten-free ie: naked meats, veggies, fish, fruits. NO coatings, rubs, marinades, seasoning, McCormick's clearly labels so you can add your own spices at first...

I just thought my eyes got tired toward the end of the day because I wear contacts. Maybe still the case. I don't notice my throat or mouth being dry. I'm not going to think about it. :) I think I have the food down pretty good. We don't eat alot of processed foods and usually have a meat, veggie and salad for dinner and I take leftovers for lunch. I do think I'm on information overload!!

I appreciate all the info I have been given.
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#26 pricklypear1971

 
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Posted 06 May 2012 - 09:07 AM

I always thought I was a little weird :)

We haven't done any genetic marker testing on anyone else. I'm not really sure it would be worth it. I only did it because the GI doc said no to Celiac and he wanted it to rule it out further. I guess in his mind it gave him one more reason to say no. Thanks for adding the links, but they were greek to me! My husband was diagnosed as Celiac as a toddler, but until it was mentioned for me, we didn't know you don't outgrow it. His tests came back negative, but he is gluten free with me.


Private message skylark with a link to your results. Ask her to look at them.

So, your daughter was dx'ed by bloodwork/biopsy - and she probably has her Dad's genes in the mix (if they ever look).

Many ai diseases have a positive reaction to gluten-free, along with celiac disease. I don't think the particular Celiac test you were + on has reasons for false + (it's ver specific). but, keep googling about that test and you may find it. Or, you can be Celiac. The genes they look for are the most common in the west - not the world - and Celiac research in other populations are showing different gene involvements. Plus, the gene itself isn't the deciding factor since not all people with the genes have celiac disease - something activates them - and they don't know what it is or how to test for it.

Good news - gluten-free helps you. So by all means keep doing it. And if your hematologist dx'ed you celiac don't fight it (especially since the diet helps) unless other issues keep popping up. And then, it may be "in addition to" issues re: Celiac.
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!




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