Any Thoughts Or Ideas?

[SamanthaC]

Hello, My name is Sam, my husband MAY have celiac.. I'm hoping to get some feedback before presenting the idea to him (let me explain why....)

Russ and I got married in 2003, (he was 19, I was 18) He would SOMETIMES throw up, but not often enough to make it a big deal, he said he had been doing it for years, so we just learned to not eat during certain times, and not certain foods.

In 2006, it started getting worse, we went to the doctor and he had blood drawn, and was told nothing was wrong, that he had acid reflux so we starting buying prolosec, EVERYTHING else that said would help

Fast forward to 2009, through 3 doctors, and 4 ER trips, Ultrasounds, x-rays, and a few Dehydrations so bad he had panic attacks.. it's getting worse and worse, sometimes 4-5 times a day. We ask (for about the 1,000 time) for a doctor to find out whats wrong. and finally, our insurance approves us to see a GI doctor. In 2010, he's had more CT scans, ultrasounds, x-rays, blood tests, and all say NOTHINGS WRONG! So they send us home with more pills, and diet restrictions NOTHING WORKS! no pills, doesn't matter spicy or not, crackers, fruit, WATER makes him throw up. The doctor told him, that (although it looks like someone SCRATCHED all down his intestines), there is nothing medically wrong with him. And he gets sent home. Again, this year I asked him to go through all of it again, more tests, more drugs, nothing works. He's had is gallbladder removed, has a hiatal hernia, enlarged spleen, and liver.

This man has never in his life had a cigarette. we RARELY drink (I say it with capitals, because the last time we drank was probably about Jan or Feb (even then it's a Smirnoff or two tops) we don't do drugs, we don't party, we are boring people with 3 little girls.

So he is tired of the doctors, the tests, the drugs that don't work. he doesn't want to do anything else (and I understand) so in my free time, I look up anything everything that can explain anything. This can't be normal. Something is going on, and doctors keep sending him home. (Yesterday for instance, between 1am and 1pm he had 4 violent vomiting episodes. We went to the ER, they did an ultrasound, gave him fluids, took blood, everything was normal so they sent us home.)

I'm wondering what you veterans of this disease think. you, your family, your friends, you know more than me. I am so frustrated watching him throw up everything, loose weight, gain weight, he doesn't sleep well, he can't eat. We stopped going out, even to see family who lives less than 10 miles away because it can happen anytime. Everyday he throws up. At LEAST 4 times a day, sometimes as many as 8. and every time we take him to the ER, to the GI, to our PCP we are told its normal or he has a virus, or my "favorite" the stomach flu! (for more than 10 years?!?!)

Anyway, I got copies of all of his records, pictures, files, blood results, and in small print, on a endoscopy from '10 it states "a mild histological manifestation of gluten sensitivity may be of these causes" To be honest, I'm WAY past asking why no one said anything about this. I just want to know if this sounds like something you guys think would be worth going forward with.

I am afraid that this is the last time he will try anything. I'm so serious, he told me yesterday he has just accepted that this will be who he is forever, I just can't stand to watch the man I am growing up with, learning how to be an adult, a parent with be in so much pain for the rest of our lives. Any insight would be greatly appreciated.

Thank you all for your help. Have a wonderful Thanksgiving holiday with your families.

-Sam

[beebs]

Sounds like it could be celiac, do you know if he has been tested for it? Even if he has false negatives can happen.

[SamanthaC]

Sorry- Got confused on how to respond. LOL

There is a Q-Tissue Transglut AB. that was <3 (it says normal is <5.

and Q- IgA that is 166 (normal 81-463)

those are both from the endoscopy in 2010.

If those are both normal, should I just change our diets without him knowing and see if that works before binging it to him (I know it sounds bad.... But if it works, its worth it...)

[beebs]

If I were you guys I'd be finding out who the best Celiac GI doctor in your area is and getting a referral to him/her. Alot of people on here don't mind if they get a diagnosis or not and if it doesn't matter to you guys then yeah go gluten free and see if it helps - just be aware that if it is gluten he may react even worse to it after cutting it out of his diet so may never get an official diag in the future.

[mommida]

Can you post the scope pictures? Or what was the eosinophil count at? Was that even screened for?

What is his hereditary background?

"Scratched intestines"? Did I read that correctly? Does that mean there was damage that looked like deep grooves (sometimes called furrowing)?

Hernia can cause constant vommiting. Was the hernia fixed?

[mommida]

You are going to have to describe the vommit episodes. How soon after eating? Is it a lot like GERD? A small amount up into the mouth that gets swallowed back down.

The panic attack ~ was it involving chest pain? Does he ever feel like food is getting stuck in his throat? Does he cough up chunks of stuff that might look like a soggy pale corn flake?

[SamanthaC]

mommida-

I don't know how to post the pictures, I'll work on that. I don't know what an "eosinophil" count is. so I don't know if he was screened for it. We don't know much about his family background, his parents both have disowned their families for personal reasons, and they are not close, so we can't ask that kind of thing (his mother is "upper" British) But I know that his brother throws up a lot too.

When I look at the pictures, it looks like scratches that are dark red, inside the intestines. Like after you scratch and something has bled.

The hernia hasn't been fixed, the new GI won't do anything until he takes more tests... but I have a friend who has a hiatal hernia and says that eating small meals and chewing a lot, and not laying down helps her. but even if he has one cracker he can throw it up.

Sometimes he will throw up right after, sometimes it will be hours. But they are violent episodes, sometimes it's full chunks of food, and sometimes it just acid. It's not GERD, we were tested for that, and he doesn't have enough of the symptoms. He has never complained that food is stuck in his throat. And I'm not sure about coughing up anything.

The panic attack was because he was so dehydrated, his sodium levels were way down. (that what the report from the ER says)

[Tarantula44]

Wow...it's amazing what food can do to people. I am new here and at the beginning of this too. I have learned so far that if tests come back normal all the time and you can't find a doctor to look deeper, that you sometimes have to take matters into your own hands. But still keep searching for a doctor that specializes in celiac like others mentioned. Another idea is to have him get food allergies tested, this could bring up something worth while. One of my friends is allergic to eggs and throws up from eating anything with eggs. But food allergies affect people very differently. What is his diet like right now?

For lots here, it matters more about how you feel than a diagnosis, so some continue their search for a diagnosis, and some eliminate gluten for several months to see if symptoms change. His problems could very well be because of gluten or dairy, or both...other foods too. It sounds like he has nothing to loose by going on a gluten free diet to see if he feels better. Keep in mind though, that you need to be actively eating gluten to have a proper diagnosis, so if you go gluten free, down the line, a diagnosis may be harder, but if you know he feels better off gluten,maybe that's all that matters. Also, keep in mind that you have to be very strict about the diet, so he needs to know if you are changing his diet because if he eats a cookie or piece of toast or something with hidden gluten when you're not with him (imitation crab, grain maltodextrin, etc), the diet won't work, and he could still feel symptoms and think that gluten is not the problem. You have to STRICTLY eliminate the gluten, but there is so much information on this site and online that can help you get started. Also, google search "hidden gluten". Maybe eliminate dairy too since a lot of celiacs react similarly to dairy. You have to do the diet for at least a few months. Sometimes, it takes a long time to see relief, in my case two months before I noticed any difference. Really, it all sounds daunting, but the diet is easy to get used to, and the people on this forum are so helpful, even if you just need to vent!