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Mummyto3

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Mummyto3 Contributor
Mummyto3
Posted

Rang drs surgery yesterday for coeliac results and was told they were 'normal'. I rang back today to find out exactly what was tested (didn't think to ask yesterday) and was told they weren't back! We'd had other blood tests done at same time, which I mentioned and they were normal, which I was told on Monday/Tues. I was confused for a normal result as I have the symptoms and my daughter has it too. Think gluten is affecting me now as my head is everywhere and I'm struggling to type (had some crisps). I'm so sure I have it..

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kareng Grand Master
kareng
Posted

Rang drs surgery yesterday for coeliac results and was told they were 'normal'. I rang back today to find out exactly what was tested (didn't think to ask yesterday) and was told they weren't back! We'd had other blood tests done at same time, which I mentioned and they were normal, which I was told on Monday/Tues. I was confused for a normal result as I have the symptoms and my daughter has it too. Think gluten is affecting me now as my head is everywhere and I'm struggling to type (had some crisps). I'm so sure I have it..

Sounds like they just gave you the results of the other tests, twice.

Write down what you want to say when they call or you call for the results. Ask if they can send them to you, or email, or you can pick up a copy - whatever works for you. Write this down so you don't forget. Get a Copy even if they are positive.

Ask them to read you the name of the test, the test result (number) & the range it falls into. Like Test ABC is 220 the range for positive is >150. Write on your paper ahead of time - Test name: ____ Result: ______ Range: ____________

Do at least 5 of these lines.

Ask if any other tests were ordered but not back yet. Sometimes one page is still sitting on the doctor's desk to be read.

No matter what the results, ask what you should do next. Even if negative, insist that you are still "sick" and what is our next step.

Get a big piece of paper & write all these things down & leave a space to put the answer. IF its results from 2 of you, 2 pages. Tell the nurse to slow down (nicely) you are a bit confused with all the numbers & letters.

Good luck. The Celiac tests can take longer because not every lab can run them & some only run them once a week on Tuesday.

JenHarris Apprentice
JenHarris
Posted

Rang drs surgery yesterday for coeliac results and was told they were 'normal'. I rang back today to find out exactly what was tested (didn't think to ask yesterday) and was told they weren't back! We'd had other blood tests done at same time, which I mentioned and they were normal, which I was told on Monday/Tues. I was confused for a normal result as I have the symptoms and my daughter has it too. Think gluten is affecting me now as my head is everywhere and I'm struggling to type (had some crisps). I'm so sure I have it..

Just remember, you can have pretty much all of the outward symptoms of Coeliac (except for DH) and be gluten intolerant/sensitive. Me and my son both have symptoms and I'm going to go through my second round of testing later this year because according to my new doctor, the testing I had two months ago wasn't done right and therefore can't be deemed conclusive, so I encourage you to make sure they are doing the right testing on you. And you might see if they will do genetic testing as well.

Mummyto3 Contributor
Mummyto3
Posted
  • Author

I assume it was in my genes for my daughter to get it, don't know if I'm right. I say it's from me because of family history of bowel problems. I rang today to check what was actually tested, thats when I found out they weren't back. I did consider asking for a copy :)

thanks for advice x

Mummyto3 Contributor
Mummyto3
Posted
  • Author

I spoke to a dr today and she said mine and hubbys test were neg but it doesn't exclude that we don't have coeliac. My levels were 0.3 and his just over 1. She said to ask more about it when my daughter has her biopsy tomorrow. I have the symptoms so not sure now... I don't think I'd bother with a biopsy, I may just go gluten free and see if I feel any better.

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    • knitty kitty
      My only proof

      By knitty kitty · Posted

      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
      My only proof

      By NanceK · Posted

      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
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By knitty kitty · Posted

      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      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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