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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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    • Russ H
      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

      By Russ H · Posted

      I used to react very badly to milk - much worse than to gluten and I was always worried about exposure. Any diary product would make me extremely ill and put me out of action for 5 days or so. I would have watery and bloody diarrhoea, bloating, malaise and be unable to eat. If I recall correctly, it was about a year after being diagnosed with coeliac disease and going on a strict gluten free diet that I accidentally consumed dairy products and didn't react. From then on, I have been fine with diary. 
    • Jane02
      Terrible Neurological Symptoms

      By Jane02 · Posted

      Sorry, I just realized how old this thread is and only read the initial post from 2021. I'll have to catch up on the comments in this thread. 
    • Jane02
      Terrible Neurological Symptoms

      By Jane02 · Posted

      Sorry to hear you're going through such a hard time. It would be worth looking into MCAS/histamine issues and also Long Covid. Perhaps there is something occurring in addition to celiac disease. It would be worth ruling out micronutrient deficiencies such as the b vitamins (B12, folate, B1, etc), vit D, and ferritin (iron stores). 
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      This sounds very similar to the neuropathic pain I experienced with type two diabetes.  Gloves and boots pattern of neuropathy is common with deficiencies in Cobalamine B12 (especially the pain in the big toe), Niacin B3, and Pyridoxine B6.  These are vitamins frequently found to be low in people with pre-diabetes and diabetes.  Remember that blood tests for vitamin levels is terribly inaccurate.  You can have vitamin deficiencies before there are any changes in blood levels.  You can have "normal" serum levels, but be deficient inside organs and tissues where the vitamins are actually utilized.  The blood is a transportation system, moving vitamins absorbed in the intestines to organs and tissues.  Just because there's trucks on the highway doesn't mean that the warehouses are full.  The body will drain organs and tissues of their stored vitamins and send them via the bloodstream to important organs like the brain and heart.  Meanwhile, the organs and tissues are depleted and function less well.   Eating a diet high in simple carbohydrates can spike blood sugar after meals.  Eating a diet high in carbohydrates consistently over time can cause worsening of symptoms.  Thiamine and other B vitamins like Niacin B3 and Pyridoxine B6, (which I noticed you are not supplementing), are needed to turn carbs, proteins and fats into energy for the body to use.  Alcohol consumption can lower blood sugar levels, and hence, alleviate the neuropathic pain.  Alcohol destroys many B vitamins, especially Pyridoxine, Thiamine and Niacin.  With alcohol consumption, blood glucose is turned into fat, stored in the liver or abdomen, then burned for fuel, thus lowering blood glucose levels.  With the cessation of alcohol and continued high carb diet, the blood glucose levels rise again over time, resulting in worsening neuropathy.   Heavy exercise can also further delete B vitamins.  Thiamine and Niacin work in balance with each other.  Sort of like a teeter-totter, thiamine is used to produce energy and Niacin is then used to reset the cycle for thiamine one used again to produce energy.  If there's no Niacin, then the energy production cycle can't reset.  Niacin is important in regulating electrolytes for nerve impulse conduction.  Electrolyte imbalance can cause neuropathic pain.   Talk to your doctors about testing for Type Two diabetes or pre-diabetes beyond an A1C test since alcohol consumption can lower A1C giving inaccurate results. Talk to your doctors about supplementing with ALL eight B vitamins, and correcting deficiencies in Pyridoxine, Niacin, and B12.  Hope this helps! Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ P. S.  Get checked for Vitamin C deficiency, aka Scurvy.  People with Diabetes and those who consume alcohol are often low in Vitamin C which can contribute to peripheral neuropathy.
    • Scott Adams
      Terrible Neurological Symptoms

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      I’m really sorry you’re dealing with this—chronic neuropathic or nociplastic pain can be incredibly frustrating, especially when testing shows no nerve damage. It’s important to clarify for readers that this type of central sensitization pain is not the same thing as ongoing gluten exposure, particularly when labs, biopsy, and nutritional status are normal. A stocking/glove pattern with normal nerve density points toward a pain-processing disorder rather than active celiac-related injury. Alcohol temporarily dampening symptoms likely reflects its central nervous system depressant effects, not treatment of an underlying gluten issue—and high-dose alcohol is dangerous and not a safe or sustainable strategy. Seeing a pain specialist is absolutely the right next step, and we encourage members to work closely with neurology and pain management rather than assuming hidden gluten exposure when objective testing does not support it.
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