Re: Re: 10-year old daughter with Hashimoto's-saw Gastroenterologist today/repeated labs

[Guest guest]

Hi BJ aka

Our doctor ordered a "Celiac HLA Panel" which apparently tests for the HLA antigens associated with Celiac disease. The doctor said that it tests for the genes that code for HLA-DQ2 (HLA-DQA1*0501 and HLA-DQB1*0201) and the genes that code for HLA-DQ8 (HLA-DQA1*03 and DQB1*0302). Thus, those four genes were tested and all were negative. Is that a sufficient genetic test?

Re: 10-year old daughter with Hashimoto's-saw Gastroenterologist today/repeated labs

Hi ,

Your daughter's results can be normal meaning she doesn't have Celiac disease. But, she could have the genes that predispose to gluten intolerance. I suggest you actually get a hard copy of the resuls and all test reports.

As an example, test results of HLA-DQ Gene Molecular analysis: HLA-DQB1*0301, 0301 means DQ7, DQ7. The way you interpret the 0301 is that the first two digits show DQ3 and the last two digits show a subtype of 1 - which is also called a DQ7.

This stuff is confusing because scientists first learned about DQ1-DQ4, but then realized that what they called DQ1 actually was comprised of two different genes, thus the subtypes 1 and 2 for DQ1 (also referred to as DQ5 and DQ6 respectively) and then the same for DQ3 with its 3 subtypes - thus you have DQ7, DQ8 and DQ9. Thus, DQ1 and DQ3 are rarely used anymore. (I mistakenly added them in as gluten intolerant marker before.) Celiacs is DQ2/8 while gluten intolerance includes DQ5, 6, 7, and 9.

The above example is a really good example of why having the full HLA-DR gene testing can be useful. My daughter has one DQ7 aka 0301 (along with DQ9 aka 0303) and it wasn't until we had the full gene testing done that we could figure out her remaining big issues. Depending upon your DRB1 and DRB3, DRB4 and DRB5 results, you could have a genotype that predisposes you to become very ill due to exposure to any kind of toxin - mold, heavy metals, toxins produced by infections - i.e., bacterial, fungal, viral and parasitic infections all result in additional biotoxins in your body. So if anyone has a DRB1 (not to be mistaken for DQ) of 4 along with DQ7, then s/he has that genotype where the body does NOT recognize the toxins, so it doesn't remove them leading to severe illness on top of AITD. Besides being predisposed to gluten intolerance the DQ6 genotype also correlates with a predisposition to become very ill upon exposure to mold.

This stuff is complicated and many doctors are clueless because they do NOT do this testing on a regular basis. Research so you know the truth. Many Endos do NOT keep up on new research.

Furthermore, I encourage you to look at the TSI and TBII (TRab) tests if anything is detectable (even in the normal ranges) you may be in for a continuous whirlwind of unknowledgeable medical professionals like my husband and I experienced before getting reliable and efficient medical care for our daughter.

Her initial TSI/TBII labs were normal and very low but nonetheless detectable. It is NOT normal to have *any* TSI or TBII whatsoever. These antibodies can increase even when FT3 and FT4 come back into the normal reference range. We have found that all PedEndos and most Endos do NOT even understand autoimmune thyroid disease. It is the MOST unDx'd and Under treated disease in the world. Some drs will not test because they don't know how to properly read these tests. I will not go into detail about interpreting these tests here, but I can explain if the need arises.

My last suggestion is if she has heart issues such as a fast heart beat get her on a beta blocker before heart damage occurs. My daughter took a BB before we found her competent help. Currently she takes a anti-thyroid drug and a thyroxine (synthetic T4) med.

Best wishes to you and your daughter,

~Bj aka

> & gt;

> & gt; Hi everyone,

> & gt;

> & gt; As you may remember, our 10-year old daughter was diagnosed with Hashimoto's 18 days ago when she was found to be hyperthyoid with a high thyroid peroxidase antibody titer. Her other antibody levels were negative and our endo told us that she was in the active inflammatory phase of Hashimoto's when the thyroid hormone gets released into the blood stream causing high levels and that if this continues, eventually she will be hypothyroid.

> & gt;

> & gt; Our pediatric endocrinologist recommended that we do nothing for now and recheck her thyroid blood tests in a month or two. She said levels take at least a month or longer to come down significantly.

> & gt;

> & gt; Well, we didn't wait that long to recheck her blood test. We waited 18 days. In the last 18 days, we went gluten-free because of all the studies I've read suggesting that a gluten-free diet may help autoimmune thyroid issues especially in gluten sensitive folks.

> & gt;

> & gt; Well, I have some good news. Thankfully our daughter's thyroid functions tests were much better today - almost normal. Her free T3 and T4 have come down dramatically and her TSH is better. Her thyroid peroxidase antibodies are still very positive but our endocrinologist said that can stay high for a long time. Please see below for today's results and the results from 3 weeks ago (June 28). The normal values are on the right side.

> & gt;

> & gt; We also checked serologies for Celiac today (including the genetic tests HLA DQ-2 and DQ-8), but we won't get those back until later in the week. The gastroenterologist that we saw today said that even if teh Celiac tests all come back normal, there's still a reasonable likelihood that our daughter is gluten sensitive and that it's very possible that the Hashimoto's is related to gluten.

> & gt;

> & gt; The plan, for now, is to continue the gluten-free diet and recheck thyroid blood tests again in two weeks - hopefully they'll be normal by then.

> & gt;

> & gt; We're also planning to see an allergist next week.

> & gt;

> & gt; Thanks, everyone for all the advice.

> & gt;

> & gt;

> & gt;

> & gt; July 16, 2012 (today)

> & gt;

> & gt; FREE T3 INDEX PROFILE

> & gt; FREE T3 INDEX @ 210 78-162

> & gt; T-UPTAKE 0.9 TBI 0.9-1.3

> & gt; T3,TOTAL @ 189 ng/dL 85-185

> & gt; FREE T4 INDEX PROFILE

> & gt; FREE T4 INDEX @ 14.2 4.5-10.5

> & gt; T4,TOTAL @ 12.8 mcg/dL 4.9-11.4

> & gt; T-UPTAKE 0.9 TBI 0.9-1.3

> & gt; THYROID PEROXIDASE ANTIBODY @ & gt; 600 IU/mL & lt; or = 20

> & gt; TSH 0.82 mcIU/mL 0.3-4.7

> & gt;

> & gt;

> & gt; June 28, 2012

> & gt;

> & gt; FREE T3 INDEX PROFILE

> & gt; FREE T3 INDEX @ 558 78-162

> & gt; T-UPTAKE @ 0.5 TBI 0.9-1.3

> & gt; T3,TOTAL @ 279 ng/dL 85-185

> & gt; FREE T4 INDEX PROFILE

> & gt; FREE T4 INDEX @ 33.0 4.5-10.5

> & gt; T4,TOTAL @ 16.5 mcg/dL 4.9-11.4

> & gt; T-UPTAKE @ 0.5 TBI 0.9-1.3

> & gt; THYROID PEROXIDASE ANTIBODY @ & gt; 600 IU/mL & lt; or = 20

> & gt; TSH 0.43 mcIU/mL 0.3-4.7

> & gt;

>

[Guest guest]

Thank you BJ. It is so frustrating that docs don't understand this. I will check and see if they can run the full HLA-DQ test. Sent from my BlackBerry® smartphone with SprintSpeedSender: Thyroiditis Date: Tue, 17 Jul 2012 23:27:14 -0000To: <Thyroiditis >ReplyTo: Thyroiditis Subject: Re: 10-year old daughter with Hashimoto's-saw Gastroenterologist today/repeated labs Hi ,The Endo only tested for those specific codes you mentioned, which are the most common geneotype testing for Celiacs. There are other codes for DQ2/8 besides those. S/he ordered the subtype 2.5, but DQ2 also has a 2.2 and 2.3 subtype. Besides the DQA1* 0301 and DQB1* 0302 there is also the DQA1* 0302 and DQB1* 0302 for DQ8 genotype, subtype 8.1 (both subtype sets are seen under the 8.1 subtype for DQ8).This tells me the doctor doesn't understand this type of testing for gluten intolerance. Again, s/he was ONLY looking for Celiac disease. S/he probably called the lab and asked for a celiac gene test and that was what s/he was told is usually ordered and then ordered it. Or it could be the lab only has this DQ gene testing readily listed. A doctor can always order specific tests, that is, if they know what to order. All you know is that your daughter does NOT have the genotype that was tested. Again, not all DQ2/DQ8 genotypes were tested, just the most common one for DQ2 and DQ8. So you have no idea what her HLA-DQ genotype is or if she even has the genes for human leukocyte antigens (HLA) for DQ proteins in her bloodstream. Celiac Disease or Gluten Intolerance occurs only in people with certain versions of an immune system protein called HLA-DQ. HLA proteins are encoded by a set of genes on chromosome 6. Together the genes are referred to as the " HLA region. " Proteins from the HLA family are involved in the immune system's recognition of invaders. They are responsible for presenting bits of foreign proteins to immune cells and triggering the cells to attack.What is needed is an HLA-DQ Gene Molecular analysis, which will show your daughter's actual DQ subtypes. I lost count of how many times I have explained these tests to doctors. Go figure! Knowledge is powerful!I hope this is helpful,~Bj> & gt; & gt;> & gt; & gt; Hi everyone,> & gt; & gt; > & gt; & gt; As you may remember, our 10-year old daughter was diagnosed with Hashimoto's 18 days ago when she was found to be hyperthyoid with a high thyroid peroxidase antibody titer. Her other antibody levels were negative and our endo told us that she was in the active inflammatory phase of Hashimoto's when the thyroid hormone gets released into the blood stream causing high levels and that if this continues, eventually she will be hypothyroid. > & gt; & gt; > & gt; & gt; Our pediatric endocrinologist recommended that we do nothing for now and recheck her thyroid blood tests in a month or two. She said levels take at least a month or longer to come down significantly. > & gt; & gt; > & gt; & gt; Well, we didn't wait that long to recheck her blood test. We waited 18 days. In the last 18 days, we went gluten-free because of all the studies I've read suggesting that a gluten-free diet may help autoimmune thyroid issues especially in gluten sensitive folks. > & gt; & gt; > & gt; & gt; Well, I have some good news. Thankfully our daughter's thyroid functions tests were much better today - almost normal. Her free T3 and T4 have come down dramatically and her TSH is better. Her thyroid peroxidase antibodies are still very positive but our endocrinologist said that can stay high for a long time. Please see below for today's results and the results from 3 weeks ago (June 28). The normal values are on the right side. > & gt; & gt; > & gt; & gt; We also checked serologies for Celiac today (including the genetic tests HLA DQ-2 and DQ-8), but we won't get those back until later in the week. The gastroenterologist that we saw today said that even if teh Celiac tests all come back normal, there's still a reasonable likelihood that our daughter is gluten sensitive and that it's very possible that the Hashimoto's is related to gluten. > & gt; & gt; > & gt; & gt; The plan, for now, is to continue the gluten-free diet and recheck thyroid blood tests again in two weeks - hopefully they'll be normal by then. > & gt; & gt; > & gt; & gt; We're also planning to see an allergist next week.> & gt; & gt; > & gt; & gt; Thanks, everyone for all the advice. > & gt; & gt; > & gt; & gt; > & gt; & gt; > & gt; & gt; July 16, 2012 (today)> & gt; & gt; > & gt; & gt; FREE T3 INDEX PROFILE> & gt; & gt; FREE T3 INDEX @ 210 78-162> & gt; & gt; T-UPTAKE 0.9 TBI 0.9-1.3> & gt; & gt; T3,TOTAL @ 189 ng/dL 85-185> & gt; & gt; FREE T4 INDEX PROFILE> & gt; & gt; FREE T4 INDEX @ 14.2 4.5-10.5> & gt; & gt; T4,TOTAL @ 12.8 mcg/dL 4.9-11.4> & gt; & gt; T-UPTAKE 0.9 TBI 0.9-1.3> & gt; & gt; THYROID PEROXIDASE ANTIBODY @ & gt; 600 IU/mL & lt; or = 20> & gt; & gt; TSH 0.82 mcIU/mL 0.3-4.7> & gt; & gt; > & gt; & gt; > & gt; & gt; June 28, 2012> & gt; & gt; > & gt; & gt; FREE T3 INDEX PROFILE> & gt; & gt; FREE T3 INDEX @ 558 78-162> & gt; & gt; T-UPTAKE @ 0.5 TBI 0.9-1.3> & gt; & gt; T3,TOTAL @ 279 ng/dL 85-185> & gt; & gt; FREE T4 INDEX PROFILE> & gt; & gt; FREE T4 INDEX @ 33.0 4.5-10.5> & gt; & gt; T4,TOTAL @ 16.5 mcg/dL 4.9-11.4> & gt; & gt; T-UPTAKE @ 0.5 TBI 0.9-1.3> & gt; & gt; THYROID PEROXIDASE ANTIBODY @ & gt; 600 IU/mL & lt; or = 20> & gt; & gt; TSH 0.43 mcIU/mL 0.3-4.7> & gt; & gt;> & gt;>