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Help And Advice Needed Please?

edpa99

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edpa99 Newbie
edpa99
Posted

Hi

I have just joined this site because I have been reading up on celiac disease and I'm now wondering if I have been misdiagnosed.

I was diagnosed with IBS in my late teens, I suffered on and off with flare ups etc but seemed to improve thrugh pregnencies etc. in the last couple of years I have noticed a really sensitivity to fatty or spicey food (takeaways) and white bread. I recently cut out white bread which helped a little. In the meantime I became very ill with achy joints and severe fatigue and was diganosed with Fibromyalgia. I have put on duluxetine which has helped a little with tiredness but not reall aches and pains. My IBS symptoms though were getting worse, so much so that I had a bad flare up with urgency, runny stools and cramps so bad I could hardly stand. The doctor put me on mebeverene and suggested the FODMAP diet. I took the meds which really havent done much but eventually gave in and have been doing the FODMAP diet for just over a week and I have felt great, tummy is better, aches and pains are reduced and fatigue alomost disappeared! Yesterday had a busy day with the in-laws over but stuck to the diet except had chicken tikka, this morning I feel aweful, tummy cramps, aches and pains and nausea. feels like tummy flu. What do you think? does this sound at all familar?

I should add my brother has had tummy issues since birth and has always been told ibs but never tested for celiac disease, but now wants to be. My son also has aspergers and has always had soft floaty stools. My daughter has an iga defficencey and has fatigue, achy muscles and joints and has terrible mood swings, which have come on gradually over the last 2 years. She is more than often constipated but does go alot, she does have cramps and urgency though.

Any comments would be much appreciated

thanks

xxx

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Takala Enthusiast
Takala
Posted

Sounds like you could have either celiac, or non- celiac gluten intolerance, both of which respond to a gluten free diet.

If you haven't been tested for celiac, you should try to get that arranged for, and if the blood tests come back negative, stick to your FODMAPS diet anyway..... no one can force you to eat gluten or any other food, if it is bad for your health.

GottaSki Mentor
GottaSki
Posted

Welcome!

All of the symptoms in your family are possibly Celiac - it presents in a large variety of ways. My kids symptoms are completely different from me and each other.

You should be tested. For the blood tests to be accurate you need to be eating gluten - they measure the antibodies that are produced in reaction to gluten ingestion. Contact your primary or gastroenterologist to start the process right away - it is up to you if you think you can tolerate gluten during the testing process - just be aware that having removed gluten the blood tests or endoscopic biopsies for Celiac Disease may be falsely negative.

Whether the tests are negative or not you should remove ALL gluten for at least three months to monitor symptoms - as you have already discovered - elimination is often the best test for Celiac Disease and is the only test for Non-Celiac Gluten Intolerance.

Good luck to you :)

edpa99 Newbie
edpa99
Posted
  • Author

Thank you for your comments, my daughter has a paed app next week so will def bring it up then. How do you feel about home tests? And only been off gluten (apart from slip up last night) one week, would it still affect results?

I am in the UK btw

Thanks

xxx

GottaSki Mentor
GottaSki
Posted

How do you feel about home tests? And only been off gluten (apart from slip up last night) one week, would it still affect results?

I don't have experience with the home test...others on this board have used them successfully. From what I understand the home test tests tTG IgA which is the most common screening test. You should request full celiac blood panel from your doctor.

Yes, removing gluten for a week can reduce the amount of antibodies in the blood. This does not mean you will test negative - there is no way to determine how much it effects the tests. I can only suggest you get them run as quickly as possible and continue to eat gluten if you are able - you don't have to overdo it - a slice or two of gluten containing bread per day is plenty.

If you have severe reaction to gluten, you'll have to decide whether it is worth consuming for more accurate testing. Some people go completely gluten-free based on the reaction to ingesting gluten alone.

Even when folks have not removed gluten testing can be frustrating. Hang in there!

nvsmom Community Regular
nvsmom
Posted

I used the biocard home test and it gave me a faint positive, buthen the labs ran my ttg IgA, I was very positive. The home tests work but the lab run ones are probably superior and test for more things. I'm guessing they would be more likely to pick up abnormal results if you aren't eating much gluten but as I said, it's just a guess.

If you want to be tested, you need to eat gluten (equivalent of 2-4 slices of bread a day) for at least 4 weeks prior to the test. You could go gluten-free without being tested as well, it really depends on your own situation, symptoms and if you need a firm diagnosis.

Best wishes to you. I hope you find an answer.

GFinDC Veteran
GFinDC
Posted

Sounds like your kids should be tested for celiac also, and your brother. It is genetic so all first degree relatives should be tested. Having the genes doesn't mean you will develop celiac, but it is possible.

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