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Why Did You?

morgan.s

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morgan.s Newbie
morgan.s
Posted

Why did you or some one you know decide to be tested? What was your experience and why chose what you did?

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kareng Grand Master
kareng
Posted

Have you been reading some of the recents posts on this forum? You can see lots of peoples experiences by reading along. :)

angie g Newbie
angie g
Posted

Why did you or some one you know decide to be tested? What was your experience and why chose what you did

I am a 35 year old female. All of my life I have had health issues and have been either misdiagnosed or put off as an hypochondriac. Now, putting it all together..it has been Celiac. As a child I had a bright white spot on the front of my permanent tooth and have always been lactose intolerant. Dentist always said that it was either damage done to permanent tooth before it broke threw the gum or a calcium deposit spot. When I was 30, I had it filed down and a crown put on. As a kid I was lactose intolerant, had frequent headaches, severe fatigue, was diagnosed with anorexia, depression and anxiety. I was unable to cope in high school. I dropped out of school in the 10th grade but at age 20, I tested and passed my GED. I have always battled IBS, Diverticulittis. I had an episode that the Dr.s called-"Temporary Paralysis" threw out my entire body and was as if my body just "locked up"..they never found the cause of it and it stopped as fast as it started.In my 20's I was tested via endoscope and colonoscopy and they found nothing. Also, in my 20's my thyroid went crazy, diagnosed with hypothyroid- Graves Disease. I had the radio-active iodine treatment on my thyroid. I have under gone multiple surgeries and have gotten worse after each surgery. Both knees scoped, 2 scopes on right shoulder, carpal tunnel, sinus surgeries.I have osteoarthritis, Systemic Lupus. My thumb nails are growing weird with deep horizontal ridges. Dermatologist said it was caused by the tendon in my thumb putting pressure on the base of the nail bed. The pain threw out my body is indescribable sometimes. My stomach is at the worst. Nausea, bloating, gas, pain, burning, cramping. I am having the "Charlie horse cramps" in weird mussels. Instead of it being in the calf, they are in the inner thigh and near the knees. I am always short of breath, get dizzy and light headed when standing. Complete body pain that comes and goes. My vision has worsened. At night if there are no lights on in the house, i have to crawl. I "loss the ground beneath me" have no depth perception. I have lost 30lbs in 2 mos. and now the Dr.s seem to becoming concerned. I also have had my lymph nodes- for years now- in my neck and armpits that will enlarge. The lympnodes in my armptis are constantly hurting and sometimes itch. Now that I have finally found a GI dr who is thorough enough, he ordered some test. I just had the endoscope last week and they found "A loss of Duodenal Folds". Dr also took alot of blood work. After looking back at some of my past blood work, I see the pattern of low ALBUMIN, that was always passed over. Now there is a chance that its the Adult Untreated Celiac-can cause intestinal cancer, lymphnoma. My teeth have been breaking off and falling out for years now and I have constant pain in my mouth. A lifetime of signs and symptoms may come to be diagnosed as CELIAC..I am now on disability and unable to work. If this was caught when I was a child, or even 10 years ago..I might not be wasting away like I seem to be...I hope this helps others before its to late..get tested...

morgan.s Newbie
morgan.s
Posted
  • Author

Thanks guys and Angie I have been experiencing.similar things except lately I have been passing blood like diarrhea and the 3 drs and 2 specialts don't know what's going on I'm glad its not cron or anything I was just wondering if every one else was the same before I start the diet Monday...

kareng Grand Master
kareng
Posted

Thanks guys and Angie I have been experiencing.similar things except lately I have been passing blood like diarrhea and the 3 drs and 2 specialts don't know what's going on I'm glad its not cron or anything I was just wondering if every one else was the same before I start the diet Monday...

Have you been tested for Celiac? If you are planning to do that, you need to continue eating gluten.

morgan.s Newbie
morgan.s
Posted
  • Author

Ya I have been but no test has shown anything other then besides blood, pain and moodswings I am fit and healthy

mommida Enthusiast
mommida
Posted

Was it ever determined where the blood was coming from? What color was the blood when you passed it?

My daughter vommitted blood from having Eosinophilic Esophagitus. A person can have eosinophils in any part of the GI tract. Do you have scoping/test results?

Angie start drinking some smart water with potassium added vitamin and minerals and start taking Liquid vitamin B12 supplements. It can help with those charlie horses.

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beachbirdie Contributor
beachbirdie
Posted

Ya I have been but no test has shown anything other then besides blood, pain and moodswings I am fit and healthy

What tests did they do?

If they didn't do enough tests, they might have missed something. Some docs only test one or two things and then they stop.

The other thing is, you might be non-celiac gluten sensitive. You will react badly to gluten, but not necessarily produce antibodies or get intestinal damage.

morgan.s Newbie
morgan.s
Posted
  • Author

Endoscopy, colonoscopy stool samples and 4 bloodtests and it ranged from dark to bright red

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      Supplements for those Diagnosed with Celiac Disease

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      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
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