Coeliac : what is your experience?

[Pinson]

Hello to All,

I would be very grateful to learn about your experience regarding coeliac disease, especially from the first days of symptoms.
-How did the first symptoms start?
-How much time did it take to reach the diagnostic?
-What test did you have that allowed to conclude you had coeliac?
-What do you know about the reliability of your test results?
-How much time did it take for the symptoms to abate after the start of your gluten-free diet?
-Did you also stop other food (milk, fat, fructose etc..?)
-Have you tried to go bakc to a normal diet? What happened?

It seems that my son (who has been T1D for 7 years) has coeliac, and we are having a rough time. 5 weeks of abodominal pains non stop, feeling nauseous and tired all the time, bowels movements from constipation to diarrhea...

All test results came back normal...in desperation, we stopped all gluten food and after 2 weeks, we are starting to see some improvements. So you undersand we are not absolutely sure it is coeliac.

I would value your input and experience, as I do not seem to find any detailed/precise information on how coeliac starts, even on the Internet sites of various Ceoliac organisations.

Many thanks

Pinson

 

[cugila]

Here is a link to the NDDIC website about Coeliac Disease. If you have seen it before my apologies, but it has a lot of useful information for those who like me know only the basic's about it.......

http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/

Ken

 

[viv1969]

My brother has coeliac disease, but his situation is a little exceptional.
He is 50 now, but was first diagnosed when he was 2. From then on our mum prepared all his food herself (obviously, as there was no 'free from' range in the 60's!), and he had no gluten at all. When he was 14 mum gradually re-introduced gluten into his diet until he was eating exactly the same as the rest of us. It wasn't until he was 35 that he was struck with the disease again after a very stressful period for him. The Drs flatly refused to believe that he had previously has coeliac until they checked his records, and they still don't understand how he had a 20 year period of his life where he was free from coeliac. He's an enigma!

The link that cugila has given is a good one.
The only way to treat coeliac is to completely eradicate gluten from the diet....to check each and every thing that he eats and drinks (don't forget drinks, because gluten is often used as a thickener). It's very time consuming and a real pain to make sure that there is NO gluten whatsoever in the diet, but if he's strict then his symptoms can be completely relieved.

Good luck!

 

[anniep]

I have suffered from IBS for many years, then I cut out wheat as it was playing havoc with my BG and instantly the IBS disapeared. I went to the doctor and she tested for Coelic but the tests came back negative. She said that it is possible to be intolerant of wheat without being coeliac.

I no longer eat wheat and I no longer have stomach cramps, bloating, diarroeh, and my BG is lower, it seems that my body just doesn't like wheat at all.

 

[MadelinesMum]

Hi, my 5 yr old daughter has T1D and coeliac disease. Her coeliac diease was picked up on a routine blood test. She only had stomach ache, sickness and bowel problems for a few weeks (but lots of pain and suffering in that time). I also have two younger boys. My 3 yr old was tested and the result was elevated but not high enough to be classed as coeliac, although he does have all the symptoms. I have spoken to other coeliacs who told me they were tested when they were younger but it did not show up but when they were older it did. My baby also shows signs if he eats certain gluten things (but not all). Therefore, I tend to keep all family meals gluten-free.

I would also be interested to find out if other coeliacs have been tested for food intolerances and did they arrange it themselves or through their GP?

 

[Helga]

We are going through the same thing with my son in law. He was diagnosed as having irritable bowel syndrome. After going to a naturopath who suggested to try and go without gluten he found relief. He is currently having a relapse and nothing seems to help him. My daughter thinks going gluten free while he is symptom free will make him not relapse but when he relapses and has a flare up going gluten free alone is not fixing him. Poor guy can't even drink a single beer anymore. Nasty problem. I do know of young people who got it and now years later seem to be fine. Good luck. Helga

 

[anniep]

My other IBS food trigger is anything acid, I can't eat much fruit except a banana for isntance. Cider vinegar was suggested for controling my dawn phenomenon but it just made ill. And I can't have a drink of beer either. Non food trigger is stress, A colleague is triggered by onion and its family. It might be worth his while experiementing a bit.

Does yous SIL take anything? as I was told my tablets take 6 weeks to become effective and so have to be taken continuously and not just when I am having and attack.

 

[witan]

Coeliac Disease is another auto-immune disease and so T1s could be considered to be more susceptible. Like T1, full blown Coeliac disease can be catostrophic, as the villi (like the beta cells in T1s) are totally destroyed.

Blood tests only pick up the anti-bodies produced by the effects of the disease and are notoriously un-reliable.
The only reliable test is to have a camera passed down through your stomach to take a biopsy
In the UK we have been very poor at diagnosing this disease, in the USA my sister was diagnosed quickly and had excellent follow up treatment and investigations to ensure that no other damage had been caused.

In theory like T1 it should have a greater prevalence in young people but globally more older patients are now being diagnosed.
This makes me believe that there is in fact nuch more to this than meets the eye. There is almost certainly a wider level of wheat/gluten intolerance (including IBS?) all the way up to full coeliac disease and until someone investigates the full spectrum of these diseases we will not know the answer.

But I would certainly suspect that the intensive breeding of wheat (even their possible contamination by GM varieties) has led to many people having an intollerance or even developing full blown coeliac disease.
After my sister was diagnosed with coeliac disease in the USA and I found out I was T2 I had the blood test (twice, as the first test went wrong?) but was declared all clear. However I know that I feel pretty awful for a few days after eating any wheat based products, so along with the lowering of carbs I now try to eliminate wheat gluten too - but I really do believe we need some thorough independant research into this.

 

[suzi]

Hi Pinson,
Coeliac disease is best diagnosed through an endoscopy, as blood tests are unreliable, and can show up as false negative. My son Andrew who was diagnosed with T1 in 2006 had a routine blood test for thyroid ect in 2007 and it showed up positive for coeliac. We had reason to believe something was wrong with him due to upset stomachs, bowel movements and lose of weight. Its not easy dealing with both, but the improvement in his health since ditching the gluten has been amazing.
Suzi x

 

[special_diet_girl]

Dear Pinson,

Our youngest son, 21 yrs, was diagnosed with T1D age 4. His consultant at the time did regular screening for coeliac disease, but it was always negative, apparently. However his diabetes seemed to be poorly controlled even though we were always very careful. The consultant then decided to do another test to check our son's IgA antibodies - this showed he is deficient in IgA, which explained why the test for coeliac disease came back negative, as it relies on IgA levels. This could well be the problem for your child. When another test, for IgG, was done this showed high levels of antibodies. Our son then went on to have a biopsy which confirmed a diagnosis of coeliac disease. He was 10 yrs old then.

If you go to these sites you can get all the info you need. Your child is most likely coeliac, don't give up! Sadly you would probably have to get him back on gluten to have a positive biopsy. We also had family members screened as I had been ill for many years. Myself and all three of our children turned out to have CD, also my Father!

nice.org.uk/nicemedia/pdf/CG86FullGuideline.pdf
Page 16 (or 17?) of this document has a chart, with blue boxes, showing what should be done if there is a negative blood test.

members2.boardhost.com/glutenfree/
This is great. Lots of people post on here. It is an open board. You can ask any questions you likw, and on the supplementary board (link at top of main page) you can access advice about coeliac disease, recipes and much more....

All the best.