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What To Expect Tomorrow?


meme2kids

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meme2kids Rookie

I went to the doctor last week and was shocked by my test results. For the last 10 years I have seen so many specialists and tests, I never know what will happen when I go in. Cardio, GI, Endocrine, rhemy, etc!

First I got in trouble for waiting so long between check-ups, I've just been tired of being treated for symptoms and never a diagnosis that lasts longer then 2 years and looked at like I'm a freak who is always sick.

1: I have lost 50 pounds: I started back up my low carb diet at the being of 2010 and was under ALOT of stress with the flooding of the Nashville in May.

2: 1/2 an inch shorter?

3: Thyroid normal hormone level: for the first time for 9 years (but I have not been on my meds for 3 years)

4: Again, I am extremely anemic

5: Sed rates were normal? Not happend in 8 years?

6: No ANA issues! Not in 8 years?

SO: doctor said that all my levels were normal, but since I had lost weight, still anemic and all my syptoms were still present, she wanted to run a few tests for Malabsorbtion issues.

By the end of Friday (Last week): Severe B12 and Vit D defient and positive for for Celiac.

Today (6 days after the postive test results): I meet with the GI Dr. He asked a few questions, poked on my stomach and he asked me what I had eaten all day. I told him, looked at me and said Good, i can get you in for a Biospy tomorrow.

What can I expect? Will I learn tomorrow if it is postive or negative?

To have been fighting for so long to find an answer, this is going way to fast. Last Friday, I had not known what Celiac Disease, No I've had a positve blood test and have biospys tomorrow.

I will be up most of the nights prepping for tomorrow, so any advise will be avidly read tonight and cherished as I'm getting ready for tomorrow.


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mushroom Proficient

Hi, and welcome to the board.

Well, that is quite a progression in diagnosis, I must say. But taken the amount of time you have had symptoms you are on the average of about 9 years to diagnosis :rolleyes:

As for the endoscopy and biopsy tomorrow, sometimes the doctors are able to see damage to the small intestine with the naked eye through the tube, sometimes they have to await the examination of the biopsy slides under magnification for the damage to show up. I hope he is going to take at least 5-6 samples because the damage can be quite patchy and not at all uniform.

The procedure itself I am sure he explained to you. You will be under sedation and probably will remember nothing; in fact, you may even wonder if they actually did it. The only chance of an after-effect will be a slightly sore throat but not everyone has this.

Even if the results of the biopsy are negative, do not let him talk you into believing you can continue to eat gluten. There is at least a 20% error rate (false negative) on the biopsy, and an extremely low error rate on positive blood work. Consider yourself a celiac and go completely gluten free after the biopsy. Consider tonight to be your last gluten meal :P:D

Jestgar Rising Star

I second 'shroomie. You've had a positive blood test. If tomorrow's results are positive (whenever you find them out) consider them as extra confirmation that you need to eat gluten free. If the results are negative, breathe a sigh that the damage isn't so extensive yet, and still eat gluten-free. :)

It's a very healthy way to live, and your life, and health, will be better for it.

meme2kids Rookie

I am eating this weekend:)

Tonight's dinner is not going to be my last glutten dinner.....

Chicken Brooth and Green Jello... I don't think so :D

I will have last meal.

My doctor said he is pretty positive the biopsy will be positve too, but wants to give me the tools to make the decision to go gluten-free, he said he just doesn't ask someone to make this life change without giving them the full picture of thier health. I asked him if being on a low carb would make a difference, he smiled and said it would not. He said Glutten was everywhere, and my result would not be effected.

He did ask me to not change the kids diet, until I sit down with the peds doctor and have them at least blood tested.

laurelfla Enthusiast

I also had never heard of Celiac. I got a biopsy fairly quickly. They called me with the results two weeks later. I don't remember any of the procedure, just wanting Coca-Cola after it was over and loopily telling my mom I loved her! :) Try to get some rest tonight and know that this forum is an incredible resource, full of people who care and will help you out at any time!

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    • knitty kitty
      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
    • knitty kitty
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      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
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