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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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    • catnapt
      how long does it take for the genetic blood test for celiac to come back?

      By catnapt · Posted

      how long does it take for the genetic blood test for celiac to come back? I saw the GI today, she was great. She says I def have an issue with gluten and that my symptoms align more with celiac disease than NCGS, so she's doing the genetic testing, Ordered a test for SIBO but said that's just to cover all bases, she doesn't think I have that. If the blood work comes back negative for the genes, then I will cancel the endoscopy. If positive, I will try the 2 week gluten challenge and get the endoscopy done. If I can't manage the gluten challenge (I had HORRIBLE symptoms last time and quit after 12 days) then we'll just assume it's celiac disease and go from there. She says she does a full nutrient panel on all her pts every year, that was nice to hear.I'm on so many supplements it would be nice to only have to get the ones I truly need! so yeh, really anxious about the test results for the genes!! I have an identical twin sister so I'd need to tell her if it's positive, she'd prob want to get tested too. *interesting note: when I said if the blood work comes back that I don't have the genes, then I'm in the clear - she said, well,,,,,,not necessarily. But she didn't want to go into as we had a lot to go over. I did make a  mental note of that comment and will ask her when I see her next time.   she was very thorough! I was impressed! she even checked- up on some lab work I had done that my Endo ordered. I like her, I am looking forward to seeing her again. I think I'll get some good advice and info from her she also complimented me on my diet.   said it was a very gut friendly and healthy diet 
    • Scott Adams
      Second chance

      By Scott Adams · Posted

      I'm not sure why "colonoscopy" keeps coming up for you, again it would be an endoscopy to diagnose celiac disease, but it seems that Kaiser should still have your records. If you were diagnosed by them in the 1990's using a blood test and endoscopy, then you definitely have celiac disease, and hopefully you've been gluten-free since that time. You should be able to contact Kaiser for those records.
    • Russ H
      Concerning GP advice

      By Russ H · Posted

      This sounds like a GP who is ignorant regarding coeliac disease. The risk with consuming gluten for several days is that it triggers the coeliac immune response, leading to raised auto-antibodies and active disease for several months. People may not even be aware of symptoms during this process, but it is causing damage to the body. As trents has said, the gut lining normally recovers on a strict gluten-free diet, and this happens much faster in children than in adults.
    • Jmartes71
      Second chance

      By Jmartes71 · Posted

      Thats the thing, diagnosed in 1994 before foods eliminated celiac by biopsy colonoscopy at Kaiser in Santa Clara  now condo's but it has to be somewhere in medical land.1999 got married, moved, changed doctor's was with former for 25 years told him I waz celiac and that.Fast forward to last year.i googled celiac specialist and what popped up was a former well known heard of hospital. I thought I would get answers to be put through unnecessary colonoscopy KNOWING im glutenfree and she wasn't listening to me for help rather than screening me for celiac! Im already diagnosed seeking medical help.I did all the appointments ask from her and when I wanted my records se t to my pcp, thats when the with holding my records when I repeatedly messaged, it was down played the seriousness and I was labeled unruly when I asked why am I going through all this when its the celiac name that IS what my issue and All my ailments surrounding it related. I am dea6eoth the autoimmune part though my blood work is supposedly fabulous. Im sibo positive,HLA-DQ2 positive, dealing with skin, eye and now ms.I was employed as a bus driver making good money, I loved it for the few years my body let me do until I was yet again fired.i went to seek medical help because my body isn't well just to be made a disability chaser. Im exhausted,glutenfree, no lawyer will help and disability is in limbo thanks to the lax on my health from the fabulous none celiac Google bay area dr snd team. Its not right.
    • trents
      Concerning GP advice

      By trents · Posted

      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
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