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olive1

New - hypothyroid, severe D deficiency & osteomalacia, ferritin deficiency, maybe celiac is the issue??

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It has been over a very frustrating year of trying to figure out what is going on. I first raised the issue with a doctor perhaps in August 2016 when I was having weight gain (maybe 10 or so pounds had crept up on me) and some pains. He ran some blood work, and my cholesterol was high and some thyroid levels were low, but we were moving soon and he told me to follow up with a new dr when we had settled. By the time we moved, I had taken a VERY bad turn. Extreme fatigue - like I could sleep more than 15 hours a day - and extreme pain to where I was hobbling around, much more weight gain (over 20 pounds), terrible memory problems including disturbing word loss, migraines had increased to more than 20 a month. I was barely functioning. It took months to get a doctor appointment in a new town, and then several rounds of bloodwork to get a diagnosis of hypothyroidism, severe D deficiency and severe ferritin deficiency. Weight continued to pile on despite a significant prescription dose of D, daily iron with C for absorption, and maybe a month or so later I was able to see a rheumatologist who believed my rheumatoid factor and elevated sed rate were red herrings and that my extreme pain were because of the super low D. It has been a couple of months and some of the pain has resolved, some remains. The brain fog and exhaustion remain. Weight is up about 35 pounds total. I am eating one meal most days plus tea and very light snacks. I have terrible bloating and gas. I have been having diarrhea several times a day. I realized today after eating dinner (a mini bagel and rice) when I once again became painfully bloated that perhaps some of the bloating is related to my diet. Even though I have cut down on my intake so much because I cannot stop gaining weight, I am still bloating so that I look pregnant. My migraines are improving, but I still have perhaps 7 per month. I haven't had any testing related to celiac. What specific tests would be appropriate? I want to make sure that if this is a possibility, that the doctor orders the correct tests the first time around. It has been more than three months since I started with the current doctor and celiac hasn't come up, and she has neglected to order necessary tests in the past. I am sure it is hard to stay on top of all possibilities so I would like to make it as easy as possible.

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1 hour ago, olive1 said:

It has been over a very frustrating year of trying to figure out what is going on. I first raised the issue with a doctor perhaps in August 2016 when I was having weight gain (maybe 10 or so pounds had crept up on me) and some pains. He ran some blood work, and my cholesterol was high and some thyroid levels were low, but we were moving soon and he told me to follow up with a new dr when we had settled. By the time we moved, I had taken a VERY bad turn. Extreme fatigue - like I could sleep more than 15 hours a day - and extreme pain to where I was hobbling around, much more weight gain (over 20 pounds), terrible memory problems including disturbing word loss, migraines had increased to more than 20 a month. I was barely functioning. It took months to get a doctor appointment in a new town, and then several rounds of bloodwork to get a diagnosis of hypothyroidism, severe D deficiency and severe ferritin deficiency. Weight continued to pile on despite a significant prescription dose of D, daily iron with C for absorption, and maybe a month or so later I was able to see a rheumatologist who believed my rheumatoid factor and elevated sed rate were red herrings and that my extreme pain were because of the super low D. It has been a couple of months and some of the pain has resolved, some remains. The brain fog and exhaustion remain. Weight is up about 35 pounds total. I am eating one meal most days plus tea and very light snacks. I have terrible bloating and gas. I have been having diarrhea several times a day. I realized today after eating dinner (a mini bagel and rice) when I once again became painfully bloated that perhaps some of the bloating is related to my diet. Even though I have cut down on my intake so much because I cannot stop gaining weight, I am still bloating so that I look pregnant. My migraines are improving, but I still have perhaps 7 per month. I haven't had any testing related to celiac. What specific tests would be appropriate? I want to make sure that if this is a possibility, that the doctor orders the correct tests the first time around. It has been more than three months since I started with the current doctor and celiac hasn't come up, and she has neglected to order necessary tests in the past. I am sure it is hard to stay on top of all possibilities so I would like to make it as easy as possible.

Welcome!

Here is testing information.  Try to get the complete panel (3 tests).  Be sure to get an IgA deficiency test.  In this case it is a control test.  If you are deficient, the IgG versions (celiac) should be run.  Why all?  Because these tests are good but not perfect.   I test positive only to the DGI IgA, yet biopsies revealed moderate to severe damage.  Keep eating gluten until all testing is done and you have the Reports in hand!!!!!!

http://www.cureceliacdisease.org/screening/

Did you get your thyroid antibodies run too?  Are you hypo because of autoimmune?  You can develop more than one autoimmune issue.  

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I did have thyroid antibodies tested, and they came back okay, so Hashi's is not suspected  (though I understand in very rare cases the antibodies don't test positive but a person still has Hashi's).

I forgot to mention the awful heartburn issue. I have gerd and it has been increasingly bad.

I don't know if celiac is the answer, and I love me some pizza, but it would be great to have a fix that explained the D, the ferritin/iron, migraine, weight, thyroid, bloating, gas, random digestive changes and heartburn issues. I saw miscarriages have also been associated (I have had several). I know there is a lot of symptom overlap, too, though. What a process. 

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I went to the doctor. She seemed reluctant to test for celiac. She said the symptoms do not sound like celiac, noting in part that I had gained, not lost weight. I read plenty of stories here of folks who gained weight before diagnosis, and this happened to a family friend, so this concerned me as a cited reason for blowing off my worry. She did relent, though, and agreed to order tests, but only two: they are listed as anti endomysial ab and anti gliaden ab on the order. These do not match the list of recommended tests in the link above. How big of a problem is it to have only a subset of the tests ordered? On the plus side, she wants me to see a GI specialist. She seemed mostly concerned about my reflux. It has been awful, but honestly I am doubtful that it can be linked to all of the symptoms that remain. Nonetheless, perhaps the GI doc will be more able to assist in at least exploring whether celiac can be ruled in or out as a cause? Would that doc need to order ALL of the remaining tests on the list, or are some more helpful than necessary for diagnosis?

Thanks!

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Well, at least she ordered some of the celiac tests, though the EMA is probably the most expensive.    Your GI can order the rest of the panel (TTG), if needed. At least you are headed in the right direction!  

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If the GI doc is not much of a celiac expert, are there tests within the panel, in addition to the TTG, which should be prioritized? Thanks!

 

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IgA Deficiency test (in the case of celiac disease, this is used as a control test to see if all IgA type tests work)

TTg IgA and TTG IgG

DGP IgA and DGP IgG (I think one of these were ordered.  There used to be Anti-Gliadin tests that are now outdated, but might still be in use and are not as accurate.  Not sure if your doctor ordered the newer "deamidated"  one, but the GI will know.) 

EMA IgA -  this was ordered.

The typical screening includes a TTG IgA and an IgA deficiency test.  This is a good test and is cheaper than the full screen, but it does not catch all celiacs (like me).  You only need one positive on the panel to go forward with an endoscopy to obtain biopsies.  

Keep eating gluten daily or NONE of the tests will work!!!!!

 

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Yes, I have to make sure I eat gluten daily. I am vegetarian and I am sure there have been days when I have none at all, just veggies like greens, maybe rice or potatoes, olive oil, spices, some fruit. Trying to eat more bread and pasta to make sure I don't mess it up. I also did low carb for a few weeks there trying to get the scale to budge (it didn't) and of course some of the low carb knocked out things like pasta and bread, which was a huge part of my vegetarian diet. Hopefully the short period of time with low carbs won't hurt.

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