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Feeling Insane, Pre-Diagnosis, But On Track
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Hi! I'm Jen and I might not be crazy.

I've been struggling with weird symptoms for years and years, I'm 31 now and strange things have been happening since I was a little baby. As a baby I was treated as though something was wrong, the older I got the more I was told I was nuts and my symptoms didn't make sense.

Over the last couple of years I've been feeling worse and worse. Test after test after test after test. Testing for lupus, rheumatoid arthritis, thyroid disorders and much more.

I was tested positive for Hashimoto's disease, and I thought I finally found the answer, but I met with an endocrinologist and he told me that regardless of having incredibly high anti-thyroglobulin antibodies, that my thyroid function is normal and that none of my symptoms are related. However, today he ran the blood tests to see if I have Celiac disease.

Now I'm just terrified that this isn't the answer and I don't know what else to do.

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Hi Jen, and welcome, and you probably are not crazy :) However, you are amongst many who have been told in their former lives that they were crazy. Fortunately, most of them did not believe it and went on to find out what was really wrong.

I am afraid you just have to sit tight and hold on for the test results to come back. You might try reading about how to do the gluten free diet in the meantime because I have a sneaking suspicion that this is information you might need.

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Hi Jen, and welcome, and you probably are not crazy :) However, you are amongst many who have been told in their former lives that they were crazy. Fortunately, most of them did not believe it and went on to find out what was really wrong.

I am afraid you just have to sit tight and hold on for the test results to come back. You might try reading about how to do the gluten free diet in the meantime because I have a sneaking suspicion that this is information you might need.

Well, at least I've discovered I'm very patient ("Patience" is tattooed across my knuckles). I've had to wait years just to have the appropriate thyroid tests run, what's another couple of days waiting on blood results?

I just can't believe how many "ah ha" moments I've had by reading articles on this site and by browsing some posts on this forum. I feel like I finally have a doctor going in the right direction.

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Well, at least I've discovered I'm very patient ("Patience" is tattooed across my knuckles). I've had to wait years just to have the appropriate thyroid tests run, what's another couple of days waiting on blood results?

I just can't believe how many "ah ha" moments I've had by reading articles on this site and by browsing some posts on this forum. I feel like I finally have a doctor going in the right direction.

You are going to need that patience, both with yourself and others, if your tests come back positive, or even if you trial the gluten free diet if they are negative. And the Ah ha moments continue - I still have at least one new one every day :rolleyes: Yes, patience is a virtue designed especially for celiacs, and those without it have a hard time. Bonne chance on your test results.

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    • So, LST my celiac sibling thinks I should see a naturopath to get additional food sensitivity tests. I think this is swell, but expensive for me. He had a panel done and was reacting to some foods he ate the most of. I have reached out to a local allergist and they do food testing but do not accept my insurance. I was going to make some more calls tomorrow. I actually do have mild reactive airway disease too which seems to go hand-in-hand with the allergists. I honestly had no idea, but makes since. What type of tests have folks had? I know I am not allergic to most foods as of November. My former GI doc ran a basic panel then but it seemed short. Has anyone had any luck with these? I read there is a difference between IGE and IGG tests. Anyone get a doc to order them and insurance to cover? I may end up having to save up for awhile to have this done with a naturopath. But I was off of payroll recently with all of this and the idea of waiting for a couple of more months to find out what other foods may be trigging me really sucks. I am off of dairy and soy, suspicious of lettuce and shrimp.
    • How about reaching out to your local celiac disease support group? http://www.houstonceliacs.org
    • Yes, I am in Houston, TX. Can anyone recommend a good GI in Houston, lots of experience with celiac?  
    • I am sorry to hear about your mother.   It is not so hard to get a medical doctor to order a celiac panel -- especially if your father was diagnosed with celiac disease.  Our family GP did not blink an eye when I first asked my daughter to be tested.    If you think your doctor will disregard your legitimate request, you can either fire him or put the request in writing and send it certified (attorneys love documentation!)  I agree that our doctors should support us.  I have a great GI, but my GP  is pretty clueless when it comes to celiac disease, but she admits it.    She does always order all the lab tests I request.  Perhaps it is because I come in with supporting medical documentation and evidence.  If she was not supportive to my satisfaction, I would find a new doctor.   Again, you can go gluten free in your own.   Chance are you have celiac disease.    But it is hard.  Really hard if you do not have the support of your family.  That is my concern.   Are you in the US?  
    • I've just read SO MUCH about the long, arduous process of getting a positive diagnosis through traditional medicine - I'm not sure I want to put myself through all that. Since my father WAS positively diagnosed - I carry the celiac gene and another gene that predisposes me to gluten sensitivity - and my fecal tests for gliadin were SO elevated - there are enough reasons for me to go to a gluten free diet. The true medical diagnosis would just make it easier for my family/friends to believe the necessity of it. My children are adults and not particularly health care nuts. I doubt they would take their own risk seriously without a medical diagnosis. I'm afraid my husband, while he is trying to be supportive at this point, will grow weary of all the things I no longer serve at meals and all the places we will no longer go to because there are not gluten free alternatives on the menu. A medical diagnosis would make it easier for him, long term, I think.  I don't have much faith in general in our western health care system. My mother died 6 months ago at age 82 after 4-5 years of many different health issues. She had given up the keys to her car in her late 70's after getting lost several times. I became her designated driver to all doctor appointments, procedures, hospital stays, etc. The incompetence and disregard I saw blew me away. I'm surprised any elderly people survive our health care system once they get on that revolving door. The reason I started seeing a naturopath is that I am looking for an alternative to medical doctors for most of my health issues as I age. I know there are some things I still have to see them for - and of course, they are essential in trauma and emergency situations. But I am on a quest to follow a more holistic approach to my health care. If this is the path I am choosing, then I have to follow my gut (no pun intended) in situations like this. I think the only reason I would go through the medical testing would be for other people - not me. It seems to me, that with so many people being gluten intolerant these days, a decent M.D. would listen to a patient that was adamant about their intent to live gluten free - positive celiac diagnosis or not (and especially with the gene and stool test results). I mean, they don't tell vegetarians they have to eat meat ... and vegetarianism is a personal choice. Sorry if I seem to be rambling ... this is all so new, and I'm trying to find my way.    
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