Celiac

[SoIhaveUC]

Hi Everyone,

I am just wondering if anyone else on this forum also has IBD and Celia's disease. I am being tested for it, and before the test the doctor told me that people with IBD can also have Celiac's. Has anyone had this test done? Or has Celia's? I have read about this and have also spoken to my sister in law who has this, but there are a lot of symptoms I don't get, as she does. So I really may not have this. The only thing that I do get from gluten is bloating and sometimes (strangely) dizziness and small pass out feelings- I have never passed out though. So am just wondering.

 

[valleysangel92]

Hello

I've got coeliac (UK spelling) . I've had it since I was 14, before my IBD symptoms even started.

I had blood tests, including one for TranstissueTransGlutaminise (TTG). Normal range is between 1 and 10 , mine kept coming back over 200. I also had an endoscopy to take biopsies, which came back clear, but my bloods kept coming back over the scale so it was decided that they just hadn't biopsied the worst areas and had missed the damage. My only symptoms were tiredness and recurrent anemia, but I recovered from both rapidly on a gluten free diet, my bloods also rapidly improved, dropping from 200+ (they stop counting at 200) to 50 in just a month.


It is possible to have coeliac and have no symptoms at all. I'm proof of that. My paediatric GI said that on paper I should of been incredibly sick, I should of been missing almost every day in school and spending most of my time in bed. But in reality, I missed very little school and apart from being tired from the anemia and joint issues (which we now know were due to fibromyalgia) I was generally fine.

My advice is to get the testing done, left untreated it can have massive repercussions, the lining of the duodenum can be severely damaged and that can lead to mal absorption and all sorts of other issues, just like the damage from IBD can.

The symptoms you are describing are actually pretty common with coeliac and are more than enough reason to get tested in my opinion.

 

[SoIhaveUC]

Thanks for that- that message was really helpful. I guess you cannot tell without a test. I am getting the blood test tomorrow, and then if, what ever they are looking for comes back positive, I would have an the endoscope.

I know that one of the symptoms is having irregular periods, mine are regular, so they said I may not have it, or could do but a mild form of it. I am not sure what happens to you in regards to this, but it was interesting the doctor says this happens to people with Coeliac's

 

[valleysangel92]

Irregular periods are a complication more than a symptom. You really don't want to wait for it to get that bad before you have testing. Having irregular periods from coeliac means that there is severe damage to your gut which has resulted in malnutrition to the point where your body cannot sustain your menstrual cycle. This can result in infertility which can be temporary but could be irreversible.

So please don't use your periods as a gauge. I stick very strictly to my gluten free diet and my bloods are perfect now. But even though I wasn't having symptoms, coeliac did take a toll on my young body. A bone density scan 3 years after diagnosis showed I'd already developed osteopenia at age 17. I hate to think what would of happened if I'd been diagnosed later.

Coeliac isn't always taken seriously until it starts causing symptoms that are really feelable, and by that stage major damage may already have happened. So please don't let your doctors talk you out of getting tested. And I don't agree with calling it mild, if you have coeliac, then your body is attacking itself, your immune system is destroying cells in your gut. Symptoms or no symptoms, that's serious.

 

[SoIhaveUC]

Thanks for your reply, that has been helpful information. Will get the blood test tomorrow and see from there

 

[Mehita]

My son was dx'd with Celiac and Crohn's at the same time. He had the same tTG test that valleysangel92 mentioned with normal being less than ten and he was just shy of 100. That prompted an endoscopy and since he is a kid and needed to have anesthesia anyway they decided to do a colonoscopy as well. Hello, Crohn's! The endoscopy also confirmed blunted villi. I can't remember if biopsies were taken or not.

Symptoms for Celiac can be all over the board to nothing noticeable. My son had horrible stomach aches every time he ate. His little body just couldn't handle it anymore. On a good note, four days after going gluten free, we had an entirely different boy. It can take six months to a year for adults though, so be patient if you get a positive diagnosis.

Your dizziness and bloating could be Celiac related. I def wouldn't rule it out. It is important to get the test though so you know if it's really Celiac and you're damaging your intestine or an intolerance that just makes you feel yucky. Celiac would require being more strict with the diet.

Keep us posted!

 

[SoIhaveUC]

Thanks, The docs said it could be IBS, or an intolerance or coeliac's. I know with white bread many people say they have difficulties eating it, so they will let me know. The thing is if it is an intolerance then I would be lucky to get away with it occasionally