Celiac As A Kid. Thirty Years Symptom Free (Or At Least Not Noticable) Now Back On The Diet.

[Brooklyncowgirl]

I'm in my fifties now. When I was a baby I nearly died from celiac. Once I began taking solid food I was constantly sick; vomiting, diarrhea the whole nine yards. I would have died except for our family physician consulting on my case with one of his old medical school professors (I'll call him Dr. K.) who diagnosed me with celiac and put me on a gluten free diet. I recovered almost immediately. As a kid, if I strayed from the diet the symptoms were immediate and severe; hours of vomiting, hours of diarrhea. This was pretty strong motivation to stay on the diet.

My worst moment, my third birthday party when my specially ordered ice cream cake arrived and my mother cut into it only to find that the store had ignored the instructions and put in the usual layers of cake. I'm too young to remember it but my mother says that I stared at the cake and one, only one tear rolled down my face. I was quickly given a bowl of ice cream with candles on it. (My mother also told me my father had to run out to catch my uncle who had stormed out of the party vowing to "punch that *&@!$ baker in the nose but I really don't remember that part)

Over the years, my symptoms abated. One by one the forbidden foods were added to my diet until on one great and glorious day I sat on a stool with some friends in Vesuvios Pizzaria on Third Avenue in Bay Ridge, Brooklyn and ate the most gooey, cheesy wonderful thing I'd ever tasted--my first slice of real pizza. I no longer had to define myself by what I could not eat.

For the next forty years or so I ate a normal diet. I may have been suffering from some low grade symptoms but if so they were so slight as to be negligable. I also had as little contact as possible with members of the medical profession. Then a few months ago, at my husband's insistence, I had one of those hideous rites of passage for those of us on the dark side of fifty--a colonoscopy. The doctor, I'll call him Gastroguy, saw Celiac on my very short list of illnesses. I told Gastroguy that I had no symptoms. Gastroguy then told me that this is something you never get over and that I was slowly destroying my small intestine and risking some very nasty side effects including an untreatable form of cancer. He had a biopsy and blood test done and sure enough, Celiac was still with me. In my mid fifties, after years of pizza and pasta and beer, I had to go back on the hated diet.

I've been gluten free since July and I'm (reluctantly) feeling some improvements in my general health. It's not even so bad following the diet at home, there are plenty of good (albeit expensive) products out there including (thank you Anheiser Bush and New Grist) reasonably drinkable beers. The worst, as everyone who has this condition knows, is when I go out. I feel like one of those hideously self absorbed health nuts quizzing the waitress over what the tortilla chips in the plate of nachos I'm considering ordering are made of or did the cook use a soy sauce with flour on my broccoli with garlic sauce.

So, I'd like to know if there's anyone out there like me. Anyone who suffered from it as a kid, whose symptoms abated, and who thought it was over and then suddenly found out that they still have this condition after years of eating a normal diet.

[ravenwoodglass]

I was not fortunate enough to have been diagnosed in childhood so I simply want to welcome you to the board. I do know your not alone as it used to be thought that children would outgrow celiac. We know now that isn't the case. I hope you heal quickly and do feel free to ask any questions you might need to.

[Roda]

Maybe you can PM yolo. If I remember correctly she was diagnosed as a baby/toddler and put back on a regular diet to then be rediagnosed as an adult. I do not fall into this category, but welcome!!

[Kelby]

Hey there!

I am in a very similar boat actually. When I was around 10 years old, I was diagnosed with Celiac, and had ridiculous stomach pain and other symptoms. I never really felt a huge change with the gluten-free diet, and when I asked to be re-tested, I started eating gluten again.

I never had symptoms since then, and to this day I dont have them. I also switched back to the diet recently for some random reason (I cant even remember why). I havent seen any change in my health really besides the fact that I dont feel run down as much any more. This result is good enough for me, and I have decided that I am not going to go back to gluten, even if I tested negative for it now.

I have found other benefits of the gluten-free diet besides protecting my digestive system, such as the fact that I just eat healthier in general. When I switched back to the diet, I started eating full meals with fish, poultry, and red meats, in addition to salads, and some solid carbs like potatoes (I forgot how much I loved them).

I understand that you may feel the need to not abide the diet, but honestly looking at it now, what negative effects has following the diet had for you? Probably none.

Hopefully this was helpful for you, and if you have any other questions for me, feel free to PM me.

Good luck with everything!

KM

[come dance with me]

I'm not coeliac but my 8yo is. We have learnt a lot about it so she knows it's for life even if the symptoms aren't able to be seen.

[CR5442]

Wow, that is some story. I am so glad that your symptoms haven't been life altering in the time that you have been eating gluten. Welcome back to the gluten free diet!

I wasn't diagnosed as a child, and as yet have not had an official diagnosis though my doctor thinks the gluten-free diet and results is pretty conclusive. When I was two and a half my mum left and my Dad struggled to look after me and my brother. I refused to eat protein, but infact I remember I was physically sick when I ate protein, so I just ate bread and gluten based produce. In a few months according to my Dad I have a stomach the size of one of the poor malnourished Ethiopian children and twig like arms and legs. I was taken in to hospital but there was no diagnosis. I was chronically constipated as a child and in to my thirties. Noone connected all my sickness episodes with possible gluten issues. I was always being sick, right up till stopping eating gluten. I always seemed to have a stomach bug, food poisoning etc. but noone around me had it. It didn't occur to me or my family that it might be gluten.

Anyway, cutting to nearly 9 weeks ago I had my 40th birthday, a four day fest of... you guessed it... gluten! Pizza, burgers with buns, cup cakes, scones with clotted cream. The Monday afterwards I had an awful gluten hangover, the worst stomach migraine in a long time. It was then I decided enough was enough, to get to the doctor to talk about it and to stop eating gluten. So yes, I think that you can have celiac as a child and kind of develop a sort of lull in symptoms, then end up back with worse symptoms. I was so poorly the first few weeks after stopping that my stepmother said if the doctor didn't do something she was going to make sure he did!

Here in the UK testing is very sparse because of funding issues so I have to wade through doctors and protocols and hopefully next week my first dietician appointment, which may or may not be a waste of time. My acupuncturist yesterday tested me against a range of foods and she said that gluten is a definite NO NO and also coconut oil (or coconut I guess). Amazing! I finally know that it hasn't all been in my head!

[arlene frances]

I am 65 years old. I had Celiac as an infant for a short period. I was symptom free until 5 years ago, I started having mild stomach upset that was corrected with a Probiotic and Activa. In January of this year I went through Breast Cancer and that is when my nausea started. The Dr's thought it was my radiation or anti biotics, the nausea continued until June when I went to a Gastro Dr. It was confirmed with testing that I had Celiac again. I felt better on the Gluten Diet until 2 weeks ago when all my symptoms reappeared even though I am eating gluten free. At this point I am frustrated.

[ravenwoodglass]

I am 65 years old. I had Celiac as an infant for a short period. I was symptom free until 5 years ago, I started having mild stomach upset that was corrected with a Probiotic and Activa. In January of this year I went through Breast Cancer and that is when my nausea started. The Dr's thought it was my radiation or anti biotics, the nausea continued until June when I went to a Gastro Dr. It was confirmed with testing that I had Celiac again. I felt better on the Gluten Diet until 2 weeks ago when all my symptoms reappeared even though I am eating gluten free. At this point I am frustrated.

Some of us become more sensitive to gluten after we have started to heal. Can you tell us what you are typically eating? Whole unprocessed foods are the best and safest. Have you been doing much eating in restaurants? Those can be risky for us. Hopefully you have changed out your toaster, replaced scratched non-stick pans, your strainer and wooden cutting boards and spoons. You may also have developed another intolerance with soy and casien being the most common.

[Gfresh404]

Damn.. I was so hoping that you're story was going to end with "And Gastroguy said I had completely healed and that he could detect no signs of Celiac Disease." Ahh another life I suppose.