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Nope Not Me!
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I've read the posts of celiacs and other gluten sensitive souls and always thought everyone had it so much worse than I could imagine. I kind of had a "there but for the grace of God" attitude about the multitude of food issues many celiacs face. But I've come to realize that once you have some serious GI issues they don't just go away...sometimes they get worse!

I've been Gluten Free faithfully for quite some time and I am now finding other reactions and beginning a food diary/elimination diet to track it. So far the dairy sensitivity has worsened and I have been experiencing a reaction to soy too. I've also been having heart palpitations and shortness of breath (saw a cardiologist who assured me I was fine other than trivial valve regurgitation). Oh, and diverticulitis issues too, I'm beginning to believe all of my issues are just food related.

I have a new mantra...

I AM NOT CRAZY, OR DEPRESSED, OR A HYPOCHONDRIAC, I JUST HAVE FOOD ISSUES!

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(Hashimoto's) Thyroiditis can cause some of the symptoms you listed as your hormones swing from hyper to hypothyroidism. It could be worth checking out...beyond the food issues. :);)

Best wishes.

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(Hashimoto's) Thyroiditis can cause some of the symptoms you listed as your hormones swing from hyper to hypothyroidism. It could be worth checking out...beyond the food issues. :);)

Best wishes.

Thanks, I've had my thyroid checked and it was good, I've wondered about sjogren's because I've also been having swallowing, choking issues, but that could also be due to GERD...oh well...

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Thanks, I've had my thyroid checked and it was good, I've wondered about sjogren's because I've also been having swallowing, choking issues, but that could also be due to GERD...oh well...

Forgive me for pushing this, but which thyroid tests did they do? Did you see the results?

Doctors often say they have checked the thyroid, but that usually means they tested TSH. If TSH is "normal" they don't look any further. Please, do check with your doc and find out if they ran Free T3, Free T4, and thyroid antibodies (anti-thyroglobulin known as TgAb and anti thyroid peroxidase, known as anti-TPO). You cannot know if you have autoimmune thyroid without those antibody tests, and autoimmune thyroid can definitely cause your symptoms.

As for the diverticulites, I've had two bouts with that. I'm finding that the soy-free, starch-free paleo/primal plan (with SCD variation so I can eat home-made yogurt!) is making a huge difference. I do not have abdominal issues as long as I stick to the plan.

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Forgive me for pushing this, but which thyroid tests did they do? Did you see the results?

Doctors often say they have checked the thyroid, but that usually means they tested TSH. If TSH is "normal" they don't look any further. Please, do check with your doc and find out if they ran Free T3, Free T4, and thyroid antibodies (anti-thyroglobulin known as TgAb and anti thyroid peroxidase, known as anti-TPO). You cannot know if you have autoimmune thyroid without those antibody tests, and autoimmune thyroid can definitely cause your symptoms.

Beachbirdie is completely correct. I am almost positive that I've had thyroid issues for 15 years but the doctors would just check my TSH, which was a high normal or just above the range, and tell me I was normal.... I accepted that and didn't ask to see the specific lab results; that was a HUGE mistake on my part. My doctor finally "found" a thyroid problem when my TSH was triple the normal range, but my symptoms hadn't changed one iota from when my TSH was in the normal range... he would call it a coincidence. Sheesh. :rolleyes:

Those Free T4 and T3 labs should be in the upper half of the normal range, at about 65-80% of normal, so if the lab range was 0-10, you would ideally want to be at a 7. When my TSH was high, my Free T4 was at 10%, or in the above example it would have been a one... and I didn't feel very good.

Best wishes with it all. :)

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Beachbirdie is completely correct. I am almost positive that I've had thyroid issues for 15 years but the doctors would just check my TSH, which was a high normal or just above the range, and tell me I was normal.... I accepted that and didn't ask to see the specific lab results; that was a HUGE mistake on my part. My doctor finally "found" a thyroid problem when my TSH was triple the normal range, but my symptoms hadn't changed one iota from when my TSH was in the normal range... he would call it a coincidence. Sheesh. :rolleyes:

Those Free T4 and T3 labs should be in the upper half of the normal range, at about 65-80% of normal, so if the lab range was 0-10, you would ideally want to be at a 7. When my TSH was high, my Free T4 was at 10%, or in the above example it would have been a one... and I didn't feel very good.

Best wishes with it all. :)

Sorry i took a break from the forum for a bit...

My TSH was 2.28 and my Free T4 was .91

I spent a few days compiling all of my symptoms, organizing the patterns of highs and lows and went to the doc armed with my own "research". I figured that there had to be a reason for all of the things happening to me. They weren't just digestive but arthritic too and then there were the heart palps. He's running an ANA, RA, and Lupus panel as well as checking SED rate and another CBC.

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Do you know your lab's ranges? A TSH of 2.28 is in the middle of my lab's range (0.2-6.0) but is on the high end if the range is 0.2-2.5... The ranges make a difference.

That's good the doctor is looking into rheumatic diseases too. Good luck with the tests.

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I don't know the ranges. It starts at .45 but the page cut off the end range. It didn't have a flag on it.

Thanks!

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Sorry i took a break from the forum for a bit...

My TSH was 2.28 and my Free T4 was .91

I spent a few days compiling all of my symptoms, organizing the patterns of highs and lows and went to the doc armed with my own "research". I figured that there had to be a reason for all of the things happening to me. They weren't just digestive but arthritic too and then there were the heart palps. He's running an ANA, RA, and Lupus panel as well as checking SED rate and another CBC.

Ask them to test your Free T3. If your lab uses ranges like my lab, your Free T4 is on the lowish end. I can't function if my TSH is as high as yours though your mileage may vary. I'd be really suspicious of early hypothyroid here. Endocrinologists are increasingly accepting of new TSH recommendations which say 2.5 (some say 3.0) is the upper end of the range...with that in mind, you are definitely on your way.

Not to mention that many hypothyroid patients show symptoms long before their labs catch up to them. I had a heck of a time getting my doc to stop looking at me as a potential cardiac patient (palpitations, high blood pressure, high cholesterol, anxiety) and start thinking about thyroid. Turns out most everything that was wrong with me at the time WAS thyroid.

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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