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Weirdly Hoping I Have It!

Beaker

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Beaker Newbie
Beaker
Posted

Hi I'm new and just going through the process of being tested.

I have suffered with daily squits for over a year, sometimes 5 - 6 times in a morning and I get a very uncomfortable bloating pain just under my rib cage. If i eat out at a restaurant I am often sick afterwards. The more I read about the disease, the more I think 'blimey, that sounds like me'. I tested weak positive for the antibody that is present in celiac disease (not sure exactly what that means) so the doctor sent me for a gastroscopy. Straight after the test the nurse said that 'everything looked normal'. My question is; if my small intestine 'looks normal' does that mean I don't have it? or can the damage be missed by eye but will show up after labs on the biopsy. After all this, I was actually looking forward to finding a solution to my problem, I have been feeling poorly and depressed for so long.

Thanks.

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Shalia Apprentice
Shalia
Posted
Hi I'm new and just going through the process of being tested.

I have suffered with daily squits for over a year, sometimes 5 - 6 times in a morning and I get a very uncomfortable bloating pain just under my rib cage. If i eat out at a restaurant I am often sick afterwards. The more I read about the disease, the more I think 'blimey, that sounds like me'. I tested weak positive for the antibody that is present in celiac disease (not sure exactly what that means) so the doctor sent me for a gastroscopy. Straight after the test the nurse said that 'everything looked normal'. My question is; if my small intestine 'looks normal' does that mean I don't have it? or can the damage be missed by eye but will show up after labs on the biopsy. After all this, I was actually looking forward to finding a solution to my problem, I have been feeling poorly and depressed for so long.

Thanks.

Well, think about it this way.

It's *highly* unlikely that someone wakes up one morning with an intestine damaged to the point that it's readily apparent. It's gotta take TIME to go from a perfectly normal intestine to a damaged intestine.

So, even if they come back saying your intestines looked normal, remember your blood did not. And just *try* the diet. You don't need anyone's permission to not eat gluten. It'll probably help you.

Also, you can never have a "negative" biopsy, you can only have a "non-positive" biopsy. You are taking someone who's gotta find microscopic damage in something like 30 feet of intestine. If your damage is anywhere but where they took samples from, you're still a celiac, you just got your samples taken from the wrong place.

Try the diet. You have nothing to lose, and a new life to gain.

Shalia

CarlaB Enthusiast
CarlaB
Posted

Welcome to the board!

Shalia is correct, there is no such thing a negative biopsy. The biopsy can prove you have it, but it can't rule it out. The best bet for you right now is to try a gluten-free diet.

In the beginning you may also react to dairy. Many are lactose intolerant until the intestine heals some. Some of us are casein intolerant. So, if you don't feel better going gluten-free, try cutting out the dairy for a while, too and see if that helps.

Marlene Contributor
Marlene
Posted

Hi there. I can totally identify with you wanting this to be Celiac. I cried when my blood test came back negative because I was so sure I had it and was sick and tired of trying to find out what was wrong with me. Turns out I am gluten/ casein intolerant but not Celiac. I can also identify with your morning scoots and the bloating under your rib cage. My specialist (before I figured out about the gluten intolerance) tested me for gall bladder disease. My gall bladder was malfunctioning so they took it out. I got much worse afterwards and even thought the feeling that a brick was about to explode under my ribs has gone, I still get pain where my gall bladder used to be. It's not as bad though and I hope and pray that as my body heals, that pain will go away. Gall bladder malfunction is a symptom of gluten intolerance. I wish I could get mine back and let it heal now that I am gluten free. The good news is that I no longer have multiple visits to the bathroom in the morning and even when I do have to go, it is now solid, the right colour, doesn't float, and doesn't reek up the house. (Sorry for the details but I am sure that anyone who has GI issues is way past getting grossed out by stuff like this ;) ) Even if I have a "bad stomach" day, it is no where near as bad as it used to be.

Take care,

Marlene

Terch Apprentice
Terch
Posted

Hi,

I also identify with you in wanting this to be Celiacs! If this isn't Celiacs then I don't know where to go from here. I had a bit of a pity party last night and told hubby that I don't think I can handle this much longer. I feel worn out with it and find everything an effort, even washing my hair has become a challenge. I am irritable as all hell, so I do have a little energy ;-)

I have been on the diet for almost three weeks and haven't noticed a difference..but I hear that it can be quite a while until I see results. I am off dairy and soy as well though i would do the whole enchilada!

I would try the diet, it certainly can't hurt and good luck with your results. I have my doctor's appt next Friday and I am sure he won't say that I have villi damage.

Kaycee Collaborator
Kaycee
Posted
Hi I'm new and just going through the process of being tested.

I tested weak positive for the antibody that is present in celiac disease (not sure exactly what that means)

Beaker,

My blood tests results came back weakly positive according the the doctor, and that was after about 5 weeks being what I thought was a pretty good effort at being gluten free. The doctor had no doublt about it being coeliac. I have not had a biopsy yet, and he did say that even if that came back negative, he would still believe I had coeliac.

So even weakly positive, is a positive and you probably need to be gluten free.

I have since had two further blood tests, and they both have been weakly positive, but thankfully the levels are coming down.

I can relate to the feelings you have and symptoms. Actually within the first week of being gluten free I noticed a difference. At a later stage I did not realise I was bloated most of the time, before my diagnosis, until I glutened myself accidently, and then remembered that is precisely how I felt pre gluten free days.

I must admit, I am forgetting how bad I felt back then, but I am so much better and that is diagnosis enough for me, along with what the doctor said. I think we all go through a stage where we doubt the diagnosis, but for me, just trying a bit of gluten sure had enoough effect that made me realise, yes the diagnosis is correct.

Best of luck and let us know if you go gluten free, whether there is a difference.

Catherine

Beaker Newbie
Beaker
Posted
  • Author

Thank you all so much for your replies, what a friendly, helpful and informative forum. Having spent some time looking through this site I am definately going to try the gluten free diet regardless of my biopsy results. I actually found out tonight that my great uncle had celiac disease so it is in the family. Unfortunately i already suffer from a serious nut allergy so i am used to restaurant paranoia and label obsession but this just further reduces the amount of goodies i can enjoy. Nevermind, health is more important than fajitas, brownies and boo hoo apparently whiskey!!!! is this true or can I still have Jack Daniels????

There seem to be lots of good gluten free outlets in the USA, i live in the UK, can anyone recommend a good shop over here. Sainsburys and Tesco seem to be ok but I was very dissapointed with the selection at Asda.

Thanks everyone

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CarlaB Enthusiast
CarlaB
Posted
is this true or can I still have Jack Daniels????

Jack Daniel's website says it's gluten-free. Distillation is supposed to remove the gluten. I'm waiting till I'm healthy to try it as there are a lot of people around here who seem to react to grain alcohol even though distillation is supposed to remove the gluten.

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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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    • Jane02
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      Contact them.
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