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vanessab (@vanessab)

Undiagnosed for years and desperate

Digestive Health | Last Active: Mar 6, 2019 | Replies (8)

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@vanessab – I feel so bad for your husband! I went without a proper diagnosis for close to 10 years – then to find out I had 2 rare, not connected GI disorders. OK now. Has he been tested for celiac disease? Many of his symptoms point to that. Celiac is an autoimmune disease, often co-existing with hypothyroidism. Also, have all his pituitary hormones been checked? Food allergies?
Don’t give up. If you have not done so already, consider going to a major university hospital or Mayo Clinic. I went to Mayo for years.

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Replies to "@vanessab - I feel so bad for your husband! I went without a proper diagnosis for..."

Thank you for your reply. It sure helps to know there are other people out there that have experience the same long drawn out diagnosis stage and eventually do get a diagnosis. He is negative for celiac, has had a few tests. I don't believe his pituitary hormones have been tested, his endo I believe is of the opinion that there is nothing more than thryroid issue. No food allergies.
We are considering Mayo and he has already been offered an appointment there. I've already sent in all the paperwork and given a date, now just waiting on the estimate of cost and then to figure out where to get that money from. We are in Canada and we're close enough to make the drive to Rochester. I'm just so afraid that they won't find the cause and then what is left?

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