Do I Still Have Celiac Disease?

[LaceyBurke]

Hi,

not sure if this is in the right place but I was diagnosed with Celiac disease in the UK at 18 months old with a biopsy and told that I might grow out of it, he made me do a gluten challenge every couple of years to test if I still had it and always within 24 hours I had sickness and diarrhoea. When I was about 16 I did the challenge and had no reaction to the gluten and so the doctor told me I'd grown out of it, did no further tests and sent me off telling me I could eat gluten again. I'm now 21 and have recently had a lot of bloating and which looking up possible causes I came across celiac disease again, where I've read everywhere that they no longer say you can grow out of it and once you have it you have it for life. I now live in Bulgaria and went to a GI doctor today and asked for a blood test, she told me that there is no blood test for Celiac disease and that if I only have bloating I am not a celiac, and girls usually grow out of it when they start menstruation (I know this is all incorrect) so now I do not know what to do as clearly Bulgaria is still way behind, Is it 100% impossible to grow out of celiac disease? What are the chances that the biopsy was wrong in 1993 and should I still be eating Gluten Free, even though the only thing I could attribute to celiac disease is bloating?

[MitziG]

It is 100% impossible to grow out of celiac disease. Frequently, the disease goes into a type of "remission" during puberty, which is likely what happened to you.

Am I understanding that at 18 you have not started mmenstruating yet? This is very common in celiac as well, and is a strong indicator of needing to be on the diet also.

There are 5 celiac blood tests that are done to dx celiac,m but in the US, they are even disregarded in favor of a biopsy, which is still considered "the gold standard". Because you had a positive biopsy already, their is no need for more testing. You have celiac then, and you still do. A gluten free diet is not optional, it is critical to avoid serious health complications. Bloating is the least of your concerns.

It is unfortunate that you were misinformed- it still happens in the US as well, though more doctors are starting to learn that celiac is not just a childhood disease. Many of us here were dx as children, or had "issues" as children and never dx until adulthood. Fortunately, going on the diet can resolve most issues that occur. Please spend lots of time here and learn all you can. It does not sound like accurate information is going to come to you by way of your doctors!

[MitziG]

I just re-read your post and see that you are 21, not 18. Sorry.

Also, I didn't make clear- while the disease goes into a "dormant" state during puberty a lot, it is still present- you just don't have noticeable symptoms. Often stress, pregnancy, surgery or illness cause the disease to "reactivate" when you have reached adulthood. It is the false "remission" of puberty that led doctors to think children outgrew it.

[ravenwoodglass]

You don't ourgrow celiac. Your doctor is woefully ignorant if he/she thinks there aren't even any tests for it! Since the only treatment is the diet it would be good for you to go ahead and get back on it. Even if you only have a couple symptoms now the antibodies are still attacking your organs including your brain.

[LaceyBurke]

'Am I understanding that at 18 you have not started mmenstruating yet? This is very common in celiac as well, and is a strong indicator of needing to be on the diet also.'

Sorry I might have worded my post a bit wrong, yes I have started menstruating but the doctor told me this was probably the reason I had no symptoms once I was a teenager, because I had started menstruation. I knew as soon as she said there was no blood test for it that I wasn't going to get any good information from her. Thank you for your replies, I will be back on my Gluten Free diet first thing tomorow, now its just the challenge of finding any gluten free products here!

[MitziG]

Stick with whole foods- fruit, vegetables, meats, nuts- rice is fine, as is quinoa and corn. There are many specialty flours but I don't know if they are available in Bulgaria. Most of the processed gluten-free foods are pretty yucky tasting!

[Takala]

If you can find some uncontaminated buckwheat groats (kasha, каша Open Original Shared Link ) and find some potato starch (or even in a pinch, make some mashed potatoes) you can make a lot of different things out of them. If you have a blender, you can also grind nuts and make nut meals to bake with, using egg and yogurt. Plain rice is pretty much available everywhere, too, that and potatoes can be your starches. You might also be using dried beans, carefully picked over and rinsed before cooking - take the cleaned beans, pour boiling water over them, let soak for an hour, pitch the soak water (to get rid of the starch which is hard to digest) and rinse again, then cook.

I've been experimenting with taking various starch foods and cooking them, then mashing them and adding it to "bread" recipes to sub for a flour that isn't there. You then just add little or no extra water, using egg and yogurt for the liquid, and it will still bake up as gluten free bread. For example, this weekend I wanted corn bread. So I took a fresh ear of corn, sliced off the kernels, microwaved it a bit and mashed it a little, and used that with my other starches - no worry about cross contamination !

Can you find or mail order tapioca starch (manioc, cassava, not sure what it is called in Bulgaria, "tapioka" "kavasa" spellings are here, scroll down Open Original Shared Link ) or Chebe mixes ? That can be used to make a lot of quick breads and even pizza dough, using eggs, grated cheese, and yogurts.