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Confusing symptoms

Sabrine
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Go to solution Solved by Scott Adams,

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Sabrine Rookie
Sabrine
Posted

I’ve only just had a diagnosis of coeliac from a blood test and I am awaiting a referral for a biopsy presumably to ascertain the level of damage to my intestine. I don’t seem to have the usual symptoms which I have read about on this site. I’ve never had diarrhoea, but I’ve had constipation on and off for the last three years. Unfortunately, as I’ve had MS for 25 years and a faulty hip replacement, I take a low level painkillers and osteoporosis medication both of which can cause constipation so it never occurred to me I had coeliac. Especially as I don’t seem to have any of the other symptoms that people describe here although I do have dry eyes and I was amazed to read that that can be a symptom of coeliac. I’m seeing a doctor on Monday and I will ask for a copy of my blood test results.  Could somebody tell me what questions I should ask the doctor about my blood test results and what I should look for in the biopsy result as a lot of it is very confusing. Apparently my blood test was 8.9.  Is that an antibody score?  I know they call it a weak positive but only just. Hoping that that score is reasonably good news or is it meaningless without the biopsy?

 

 

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Scott Adams Grand Master
Scott Adams
Posted

Can you also provide the reference range that should be with your test result?

We've done some research summaries on MS and celiac disease that you may find interesting:
https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/multiple-sclerosis-and-celiac-disease/

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.

 

 

Sabrine Rookie
Sabrine
Posted
  • Author

Our wonderful NHS has become rather slow of late so I am still waiting to find out more about my test results. I have recently had more blood tests taken which seem to be for vitamin deficiencies and I have my endoscopy next Wednesday. I will definitely ask what scale is used and then I will post my results. I am very grateful for the advice I have been given on this site. 

Scott Adams Grand Master
Scott Adams
Posted

I hope you have been eating gluten daily, lots of it, for your endoscopy. Some people mistakenly go gluten-free before all testing for celiac disease is completed, and doing that can cause false-negative results.

Sabrine Rookie
Sabrine
Posted
  • Author

I have been making sure my gluten intake is as high as possible eating loads of bread and pasta. The strange thing is, it’s not making me feel ill at all.  It never has. And yet I definitely tested positive positive for coeliac on my antibody test. Very strange.

  • Solution
Scott Adams Grand Master
Scott Adams
Posted
  • Solution

Many people with celiac disease are asymptomatic, but unfortunately if they keep eating gluten they still run the same health risks as those who have symptoms.

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    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
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      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

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      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      My only proof

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