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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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      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      results from 13 day gluten challenge - does this mean I can't have celiac?

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      results from 13 day gluten challenge - does this mean I can't have celiac?

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    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      so do you have celiac or not? 🤔 why are your vision issues undiagnosed? 😢 what does your ophthalmologist say?  do you have a serious vit A deficiency? what do you take for it? how long have you had celiac disease and how long did  it take to get a diagnosis?   if you are legally blind there are adaptive devices that will help you. I have vision difficulties as well but did not qualify (at least not yet)   do you have a vit A deficiency? why are you undiagnosed? what does your ophthalmologist say? I have a retinal specialist and he tells me my eye condition can not be fixed- until/unless it gets to the point of where surgery is safer since the surgery can leave me actually blind... so you want to wait til it gets really bad 🤪     I hope you find what works for you.    PS   the medication I started at the same time as the gluten challenge is obvious from the condition it's trying to treat. you can google it 😉 it is not an for any auto immune condition.   
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt,  I apologize.  Obviously I've confused you with someone else.  I have vision problems due to undiagnosed Celiac complications.  Being legally blind, y'all look the same from here.   You still have not said which new medication you started taking.  Parathyroid disorders can affect antibody production.  Bone Loss Correlated with Parathyroid Hormone Levels in Adult Celiac Patients https://pubmed.ncbi.nlm.nih.gov/36619734/ Effect of vitamin B1 supplementation on bone turnover markers in adults: an exploratory single-arm pilot study https://pmc.ncbi.nlm.nih.gov/articles/PMC12075007/
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      during the gluten challenge I did not consume any wheat germ   the wheat germ is TOASTED - it's the only way it is sold now afiak doesn't matter I consume vast amounts of lectin containing foods PROPERLY prepared and have for well over a decade. They do not bother me in the least.    no anemia however the endo who ordered the celiac panel is the one who suggested the 2 week gluten challenge of eating at least 2 slices of bread per day or a serving of pasta- ALSO put me on a new drug at the same time (not a good idea)  I ate 4 slices because they were thin, or 2 English muffins, and just once some lasagna that someone else made since I stopped eating wheat pasta years ago. The English muffins caused some of the worst symptoms but that pc of lasagna almost killed me ( not literally but the pain was extreme) during those 12 days there were at least 3 times I considered going to Urgent Care.   This entire process was a waste of time TBH due to being on that new drug at the exact same time. it is impossible to tell if the drug I am taking for the possible renal calcium leak is working or not- given the dramatic response to the gluten challenge and resulting nausea (no vomiting) and eventually a loss of appetite and lower intake of foods so now I have a dangerously low potassium level   I don't have a simple case of celiac or no- I have an extremely complicated case with multiple variables I am seeing an endocrinologist for a problem with the calcium sensing glands - that system is very complicated and she has been unable to give me a firm diagnosis after many tests with confusing and often alarming results. She also appears to be inexperienced and unsure of herself. but I don't have the luxury of finding a new endo due to multiple issues of insurance, lack of drs in my area, money and transportation. so I'm stuck with her At least she hasn't given up    in any case I can assure you that lectins are not and never were the problem. I know they are a favorite villain in some circles to point to, but I have ZERO symptoms from my NORMAL diet which DOES NOT contain gluten. The longer I went without bread or foods with wheat like raisin bran cereal, the better I have felt. my body had been telling me for several years that wheat was the problem- or maybe specifically gluten, that remains to be seen- and stopping eating it was the best thing I could have done   I almost had unnecessary MAJOR SURGERY due to joint pain that I ONLY have if I am eating bread or related products I assumed it was the refined grains - never really suspected gluten but it does not matter I won't put that poison in my body ever again not that it is literally poison but it is def toxic to me        
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt,  I'm sorry you're having such a rough time.   How much wheat germ and how much gluten were you eating? Lectins in beans can be broken down by pressure cooking them.  Do you pressure cook your beans?  Were you pressure cooking your wheat germ? What drugs are you taking?  Some immunosuppressive drugs affect IgA production.  Do you have anemia?
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st   worst 12 days of my life   Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
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