New And Need Help

[Ziva]

I am new, January, to the Celiac board and to the possible diagnosis of Celiac. I posted somewhere before but am not sure where it went!

I have read around in the board, but there is so much information that I am getting overwhelmed and don't know how to interpret all this information. Just when I think I understand, I find I don't know much.

I went for a routine over 50 colonoscopy, and the doctor was concerned about anemia and the size of my red blood cells. This lead to several blood tests etc.

tTg <3 (<5 Negative) , IgA 390 (normal - 81-463), Antigliadin ab, Iga, U/mL 13 high (<11 - Neg / 11-17 -Equivocal / >17 positive.)

HGB 11.9 low (12.2-16.0), HCT 36.1 low (37.0-47.0) , MCV 68.3 low (81.0-99.0), MCH 22.5 low (27.0 -31.0)

EO% high (0.0 - 3.0)

ANA positive

Total Protein 8.3 high (6.4-8.2)

H.pylori IgM -equivocal - abnormal - all others negative - what does this mean?

Iron profile normal

Vitamin D, 25-hydroxy low (30.0-100.0)

I also had a ct scan of small intestine and it was normal. On endoscopy the GI didn't see anything and on only one biopsy it came back normal. I have read around about peoples beliefs on this. Just received word of gene test, and it was normal and no celiac. I have not actually seen the results. I read on the FAQ you should go through Promethius, but my insurance would only cover going through Quest. Is Quest seen as reliable as other labs? Or do all my labs / symptoms point to Celiac no matter what?

I am now taking iron and Vit D. and off gluten for about a week. I found some symptoms I may have are early menopause, heart palpatations, floating poo, and maybe restless legs. I don't really eat a lot of bread, pasta or processed foods. I looked at our spices and most of them don't contain gluten. No more soy sause, creamy dressings or boulion cubes though. Could the amount of gluten I eat daily affect the celiac panel tests? I've read on the gluten challenge you should eat 4 slices of bread a day. Is that so you have enough gluten in your system or what most people eat in a day?

Any input would be appreciated.

[rosetapper23]

The symptoms you describe also sound like possible hyperthyroidism--have you had your thyroid tested recently? Our hormones are all interrelated and work as a system, and sometimes when a woman is going through menopause, she will also have thyroid problems.

By the way, you can find all of your past threads by clicking on the arrow next to your handle/name in the upper-righthand corner and selecting "My Content."

[Ziva]

The symptoms you describe also sound like possible hyperthyroidism--have you had your thyroid tested recently? Our hormones are all interrelated and work as a system, and sometimes when a woman is going through menopause, she will also have thyroid problems.

By the way, you can find all of your past threads by clicking on the arrow next to your handle/name in the upper-righthand corner and selecting "My Content."

Thanks for the reply. On annual blood tests my thyroid level has been fine. I have one more test tomorrow and will see were that goes. If the two doctors can't agree, I'll just go gluten free and see what happens. I will pick up the gene test results tomorrow and see if they tested all parts listed under the FAQ.

I found my past post under my content, but not in the forum section. Found out I was looking in the wrong forum.

[Ziva]

I still have a few questions and would apprciate any input. Look at previous post for other tests results.

1. If the only test I showed any increased number to was Antiglaiden ab, IgA at 13 (11-17 equivocal) is that enough to say Celiac? Neg on biopsy and neg on genetic marker. Anemic and Vit D insufficiency. See above.

2. My daughter was tested and the test done was Gliadin , IgG & IgA - normal and TTG IgA normal and TTG IgG High at 9.3 (<6 neg, 6-9 week pos, and >9 positive). Biopsy scheduled. Should I request more blood work or is the one area enough to say Celiac? Reading up on Celiac, she has more outward symptoms than me. Attributed some problems to Asthma and diagnosed with IBS this summer. Because she is young and I want to make sure before she spends her life gluten free and we can still do more blood tests.

3. What does it mean when H. pyloria, IgM is abnormal?

Thanks

[beachbirdie]

Thanks for the reply. On annual blood tests my thyroid level has been fine. I have one more test tomorrow and will see were that goes. If the two doctors can't agree, I'll just go gluten free and see what happens. I will pick up the gene test results tomorrow and see if they tested all parts listed under the FAQ.

What thyroid tests have they done? They should do more than just TSH. They need to look at your levels of Free Thyroid Hormone (Free T3, Free T4).

You have a positive ANA. That is an indicator of autoimmune disease. They should be looking into this...did they test your thyroid antibodies?

Not sure why they only took one biopsy. I am thinking I would not be happy with this doctor.

If you can stick to the diet without official diagnosis, that sounds like a good plan. Your body will tell you what the docs won't!

[GFinDC]

If you are going to try the gluten-free diet, and I think you should, it is best to go for 3 to 6 months. There is no point in doing it half right for a short period of time and making a judgment on that basis. Some people don't start feeling significantly better for 6 months or more.

I agree, one biopsy is not right. The usual recommendation is 5 or more.

[Ziva]

Thanks for the replies.

The only test for thyroid was the TSH. I will request more thyroid blood work @ my appt. the 1st of May.

I am a bit frustrated with my doctors. I have showed anemia for several years on my blood work but it didn't raise any flags with my pcp other than telling me to take some iron. I thought he knew what he was doing and I didn't know any better! My GI doctor has dismissed me to come back in 10 yrs for a colonoscopy. Believe I will find another one by then. The hematologist is the one who says I have Celiac. I called his office yesterday, to ask about thyroid test and h. plori. He wants me to take the 3 antibiotics for the h. pylori. Wish they would have called me and wanted me to do something rather than me calling them.

Thanks again

[Metoo]

Thanks for the replies.

The only test for thyroid was the TSH. I will request more thyroid blood work @ my appt. the 1st of May.

I am a bit frustrated with my doctors. I have showed anemia for several years on my blood work but it didn't raise any flags with my pcp other than telling me to take some iron. I thought he knew what he was doing and I didn't know any better! My GI doctor has dismissed me to come back in 10 yrs for a colonoscopy. Believe I will find another one by then. The hematologist is the one who says I have Celiac. I called his office yesterday, to ask about thyroid test and h. plori. He wants me to take the 3 antibiotics for the h. pylori. Wish they would have called me and wanted me to do something rather than me calling them.

Thanks again

I wouldn't wait until May 1st. I would get a new family doctor, with a positive ANA, you should be checked more thouroughly for thyroid problems, its a sign that you do have an autoimmune disorder.. You should do a full Thyroid blood panel including antibody test.

[basilicious]

To answer your genetic testing question: Yes, Quest is good. They test for both the alpha and beta subunits of the HLA sequence in question.

This link may be helpful Open Original Shared Link

[Ziva]

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

[GFinDC]

They are thinking about Hashimoto's antibody tests I think. Hashimoto's is an autoimmune condition where the antibodies attack the thyroid gland. The attack on the thyroid is variable so the thyroid hormone can rise and lower repeatedly depending on how the attacks are going. Think of it as a war and the ebb and flow of attacks. So sometimes you have high thyroid (hyperthryoid) and sometimes low thyroid (hypothyroid). The antibodie tests are called TPO, and that means something I forget right now. But it's the antibodies to your thyroid.

So you could have a racing heart one day with high thyroid hormone levels and go to your doctor for tests the next week and have perfectly normal hormone readings. But the antibodies tests will show if there is a thyroid war going on.

Hashimoto's thyroiditis is more frequent in women and seems to be more frequent in women with celiac disease.

[Ziva]

I'm not sure if I can change the heading to something like...Been around for a short time, and still need input from those who have been around awhile!

I had follow up appt with hematologist that believes I have Celiac. Even though GI says no. I had blood drawn the week before so he had results. The thyroid tests were:

Doctor said these are fine.

T3 uptake 30 - normal (22.0 -35)

Thyroxine (T4)- 7.1 -normal (4.5 - 12.0)

Free thyroxine index 2.1 - normal (1.4-3.8)

TSH 1.27 - normal (.40-4.5)

There is also a T3, free, pg/Dl 3.1 - normal (2.3-4.2)

Can I have some input on what this might mean for me? If I'm gluten free will the symptoms get worse or does the progression stop?

Sjogren's antibodies (SSB)1.4 Pos - abnormal

Sjogren's antibodies (SSA)<1.0 Neg - normal

ANA Cascading reflex interpretation - This finding suggests Sjogren's syndrome.

Anti-nuclear ab titer 1:40 - high (1:40 neg, 1:40-1:80 Low antibody level, >1:80 Elevated antibody)

Found out I'm also low on B12 and am going to start weekly B12 injections for 6 mths. Is weekly normal?

Any input is helpful. Thanks

[MitziG]

Smart hematologist. I would be inclined to agree with him! If he can give you the dx, or if his opinion is enough for you, I would say go gluten-free. Most of your symptoms should resolve- with time. Unfortunately, you acquired sjoren's already. fortunately, you do not seem to have Hashimotos. Going gluten-free can stop or slow the progression/development of additional autoimmune disorders at least!

Did I miss it in the thread?- was your daughter biopsied yet? If not, get one asap and then get her on the diet as well!

[MitziG]

Oh, now I see your daughter was dx as well.. good! She has just been spared alifetime of freaky health issues! I think you will find yourself feeling much better a year from now!

[Ziva]

Did I miss it in the thread?- was your daughter biopsied yet? If not, get one asap and then get her on the diet as well!

She was biopsied and he again said "classic Celiac" as she was recovering from endo, but would have to see what biopsy showed. She went gluten free and we went for a 3 week follow up after endoscopy and the GI doc did a flip flop to No Celiac because biopsy was "normal". He went with IBS and said she could eat carbohydrate light. She feels better although not too happy about being gluten free at 21, but she is willing to stay gluten free. I'm so glad I've been reading on this forum, learned how much doctors don't really know and not to listen to all they say! Her doctor is at least willing to entertain the idea of staying off gluten if it makes her feel better.

[beachbirdie]

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.

[Ziva]

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.

[Ziva]

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?

[beachbirdie]

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.

[pricklypear1971]

Read this to help you interpret Celiac antibody tests https://www.celiac.com/articles/57/1/Interpretation-of-Celiac-Disease-Blood-Test-Results/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.

[Ziva]

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?

[pricklypear1971]

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.

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[mamaw]

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 ....

[Ziva]

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.

[Ziva]

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.