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Hello.....i'm Scared!

KAG

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KAG Rookie
KAG
Posted

Hello,

I found this site about a year ago and really haven't been back until a few months ago. I don't think I ever introduced myself and I am not very saavy with message boards. I did post a few times but never even thought of introducing myself. So, here I am. Hello. I have just recently started going back to the doctor again after 4 or 5 years of avoiding them (other than to get my thyroid meds and yearly exam, I just say, "everything's fine" and move on). I will start at the beginning and try to be brief before I get to my main questions.

I think I have had dairy allergies from early on because of ear infections, bed-wetting, and how sick I looked in a lot of childhood photos, also with eye shiners. My mother didn't have a clue. The real problems started with my first pregnancy. I was always constipated most of my life but I think that had to do with dairy. I started with several digestion issues like heartburn that weren't that big of a deal, but getting worse. When I was getting divorced a year later, I basically had every type of digestion problem except throwing up. I was in a lot of pain and alternated between D and C.

I started with the doctors who put my on anti-depressants, then every IBS medication. I had pre-cancerous polyps. Then went to candida, allergy doctor. I was treated for candida and they confirmed a dairy allergy. I pretty much jumped from doctor to doctor. I did get a endoscopy, but the doctor didn't even do a biopsy, he just said everything "looked" ok.

This was 12 years ago when it started. I found out about celiac on my own. I have been eating a natural whole foods diet and I am not in pain anymore. I found a natural doctor to put me on armour thyroid which helped a lot of my problems that I didn't even know could get better.

I have to go back to the doctor to get another colonoscopy. I went over my symptoms and stuff and I just had a stomach emptying test, don't know the results yet. It seems like when I have D, then I won't have another BM for 2 days. It just seems like it takes two days to get food through my system. I can also burp up food many many hours later. I also feel like I have a lot of bad bacteria and I take quite a bit of probiotics.

What I know for sure: eating gluten causes me to have uncontrollable smelly gas and sometimes the gas leaks out without me knowing it, dairy causes me to have constipation and I can have symptoms for three days and I loose my sense of smell, I think it is the inflammation. My hair falls out, I have acne, I have been B12 anemic.

I had been cheating with dairy way too much and I have just been a few weeks without any dairy. I just never seem to be symptom free so I don't know what else could be going on.

My new doctor is going to be doing bloodwork and I am going to have another colonoscopy and he is also going to be doing an endoscopy. But he wants me to be on gluten for 3 weeks, which starts today. There is a possibility that it may show up negative anyway.

But my questions, I just can never get a handle on my problems so I want to know if it is celiac and if I just need to be more careful or is it something else? I don't keep much gluten in the house, and my kids are careful. The problem is my mother that she just doesn't get it even though she has all kinds of problems like diabetes that could be improved with diet. Oh well, another story.

The biggest issue is that sometimes I can have really smelly gas that I can't even feel and sometimes my smelling goes so it gets very embarrasing sometimes. I want to get tested but I know the next three weeks are going to be hell. And it's hard to think about eating gluten (rat poison) right now.

I've been kind of gluten free for quite a while but I have found that my vitamin e had gluten and a few other things. I'm sorry I am rambling and trying to cover everything, but at this point it all feels hopeless and I am doomed to live a life as a hermit.

Kim

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gfgypsyqueen Enthusiast
gfgypsyqueen
Posted

Hi,

I know you have to eat gluten for a biopsy, the debate is how long. Some people say 6 mths before you will see any damage that can be found in a biopsy.

Gastric emptying, if it comes back delayed i.e., gastroparesis, ask about the meds and the side effects of them. Some of the meds really make me crazy. I refused to take them. Others only work for so long. I like the herbs best. Try to de-stress your life, that will help.

Sounds like you eat some dairy and eat some gluten, by try to remain free of both. Regardless of the biopsy results, you might do well on a strict gluten free dairy/casein free diet for 6mth. No mistakes, no cheats, ultra strict.

Quite a few of us had terrble gas, D, C, weight loss, weight gain, moods, sleep problems, depression, the list just goes on and on. Sometimes the biopsy finds damage and sometimes there is no damage but the person feels better on this diet. Once you go completely gluten-free and casein free for a few months you will probably start feeling better.

BTW, immediate family, like moms and dads and siblings, don't always have the best reaction to the news that you have celiacs and they might too. IMO, worry about yourself. When you feel better and are back to your old self, they may want more info, but more than likely they will still not want to know that this "crazy disease" could have come from them.

KAG Rookie
KAG
Posted
  • Author
Hi,

I know you have to eat gluten for a biopsy, the debate is how long. Some people say 6 mths before you will see any damage that can be found in a biopsy.

Gastric emptying, if it comes back delayed i.e., gastroparesis, ask about the meds and the side effects of them. Some of the meds really make me crazy. I refused to take them. Others only work for so long. I like the herbs best. Try to de-stress your life, that will help.

Sounds like you eat some dairy and eat some gluten, by try to remain free of both. Regardless of the biopsy results, you might do well on a strict gluten free dairy/casein free diet for 6mth. No mistakes, no cheats, ultra strict.

Quite a few of us had terrble gas, D, C, weight loss, weight gain, moods, sleep problems, depression, the list just goes on and on. Sometimes the biopsy finds damage and sometimes there is no damage but the person feels better on this diet. Once you go completely gluten-free and casein free for a few months you will probably start feeling better.

BTW, immediate family, like moms and dads and siblings, don't always have the best reaction to the news that you have celiacs and they might too. IMO, worry about yourself. When you feel better and are back to your old self, they may want more info, but more than likely they will still not want to know that this "crazy disease" could have come from them.

KAG Rookie
KAG
Posted
  • Author

Thank you.

What type of herbs do you use? Besides my thyroid medication, it seems like all of the medications I have ever been on have caused more of a problem than any help. My daughter said that if I know that gluten was a problem then what does it matter what the test said. I have to go in to get a colonoscopy any way. Sometimes I just wish I had answers. And you are probably right. I have not been strict enough to see enough results.

Kim

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