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Looking For Some Reassurance
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3 posts in this topic

Hi there

I am looking for a little reassurance. I come from a family where digestive problems are rife...we have IBS, reflux and all sort of problems on that front and we have always had issues digesting bread and pasta.

For the past 10 years, I have been ill for at least 50% of the time. Lots of sore throats, fatigue, poor immune system, digestive problems, indigestion, reflux, nausea, the big "D" on a daily basis, hypoglycaemia, bloating, gas, itchy skin, gum problems, I eat very little (less than my 8 year old child) but I am a bit overweight despite this, I have also had problems with anxiety and constant issues with headaches and "brain fog". I thought for a while I was going mad, because the doctor kept telling me there was nothing wrong with me and it was all in my mind.

Recently, my sister was diagnosed as celiac. I decided then to try stopping gluten myself after reading up on the symptoms, which I seemed to have. I was initially worse for 2 weeks - almost like all my symptoms were magnified, with night sweats, hives, bloating, gas, major mood swings. Then after that I felt much better. Lighter, more vital and stronger.

After six months on this diet, I feel MUCH better. My toilet habits returned to normal for the first time in 10 years after only 48 hours on the diet, the bloating and gas went, my reflux went, I don

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Yes, this is because of your exposure. You are almost definitely celiac. What happens is the longer you are off gluten, the more you heal, the stronger your immune system becomes. All those colds and viruses you used to get? That was because your immune system was too busy attacking your intestines to be bothered fighting off germs. But now it has reccovered, it is no longer constantly distracted with gluten, and so it is like a vigilant soldier, patrolling your bloodstream for offenders! And because it is basically unnoccupied, save for the occasional germ that gets in, when even a teensy weensy particle of gluten gets is WHAM, full fledged attack. All the troops are called in to kill it. Of course, gluten isn't a germ, so the real attack is on your body tissues, which happen to be in proximity to the gluten. And so now you get much sicker, much faster and much more violently then you ever did in your pre-gluten free world.

What you described is very, very typical amongst us celiacs. And while I wish I could say you will feel better tomorrow...probably not going to happen. For the lucky, a gluten reaction lasts a few days, for the majority, you feel lousy for a week to 10 days after, and slowly return to normal. For a few, the reaction can last for weeks.

From here on out, consider yourself a celiac. Be very vigilant about everything you come in contact with, even when it seems you are overreacting. It is necessary to not only save your life, but also to prevent you from a continual low-grade lousy feeling.

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Thanks very much for the reply, I really appreciate it.

After 9 days I started to feel better. Now almost 3 weeks in I feel closer to normal.

It

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    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
    • I was tested for the full panel, I believe. I had normal values for t-transglutaminase (ttg) igg,t-transglutaminase (ttg) iga, deamidated gliadin abs igg, deamidated gliadin abs iga, and immunoglobulin a qn serum.  
    • Going gluten free may be beneficial if you're among the roughly 10 percent of people who suffer from celiac disease, a genetic immune disorder, ... View the full article
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