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Well,thats It Then....results Are In!


Twiggy

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Twiggy Rookie

After nagative endomysil blood tests and negative gastroscopy results the doctor has diagnosed me as gluten intolerant.She advised me that like ceoliac patients i should avoid gluten like the plague.She admited that test results are not always accurate and said that if i wanted to repeat the test i would have to reintroduce gluten into my diet for the next 6 months.There is no way! i would rather boil my own head than eat gluten ever again.So betwean us we decided that if i was going to go gluten free there was no need for further testing as the treatment would just involve what i am already doing anyway.I think i may just accept this and get on with my gluten free life,i cant be bothered persuing a label for my condition,i am just happy i am rid of those horrid symptoms.The reason for this post is to ask all of you more clued up folks if you think i made the right decision?? please respond,i feel your input will calm my thoughs :)


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Rudi Newbie
After nagative endomysil blood tests and negative gastroscopy results the doctor has diagnosed me as gluten intolerant.She advised me that like ceoliac patients i should avoid gluten like the plague.She admited that test results are not always accurate and said that if i wanted to repeat the test i would have to reintroduce gluten into my diet for the next 6 months.There is no way! i would rather boil my own head than eat gluten ever again.So betwean us we decided that if i was going to go gluten free there was no need for further testing as the treatment would just involve what i am already doing anyway.I think i may just accept this and get on with my gluten free life,i cant be bothered persuing a label for my condition,i am just happy i am rid of those horrid symptoms.The reason for this post is to ask all of you more clued up folks if you think i made the right decision?? please respond,i feel your input will calm my thoughs :)

Hi Twiggy,

My wife had a blood test and endoscopy done recently and the results were negative for celia disease. She has the same symptoms of many people here on this forum and two weeks ago, she decided to go GLUTEN FREE, even though we don't have difinitive answers as to what is causing her symptoms. Its frustrating not getting any answers, however she has been feeling better since she went gluten free and is afraid to even try anything with gluten for fear that her symptoms will return. I think you made the right decision, the diet is not harmful and in many respects better for you. Welcome to the post, there are many people here who are very knowledgeable and have great advice...they have certainly helped me and my wife. Good luck! :)

Twiggy Rookie

Thanks Rudi,i have to admit i share your wife's fear of gluten containing foods.I cant bear the smell of bread and the smell of cooking pasta either,maybe its a defence mechanism to keep me safe.Nothing tastes as good as i feel since ive stopped eating gluten (6 weeks ago) so i dont feel like i am missing out on anything.I do find it comforting though that if go out to eat and accidently get glutened, the worst i will suffer is a couple of days of gasto probs but its not actually a danger to my long term health like coeliac Desease sufferers.I agree also that the diet is more healthy than a gluten one as it limits processed food and i am a big believer that they cause cancer.Hope your wife continues to feel better too.x

ranger Enthusiast

I think you are doing the right thing. Many on this forum tested negative But gluten still made them sick. As they say, the proof is in the pudding, and my pudding is thickened with cornstarch. Glad you're feeling better.

lizard00 Enthusiast

If gluten makes you sick, then avoiding it is the right thing to do. After one week of being gluten-free, I realized I was scared of gluten, too. I went gluten-free and haven't looked back. I tested negative, too, but my doc is pretty convinced I have celiac and has diagnosed me as such. But you are right, it doesn't really matter if you have the label or not; the treatment is the same.

I hope you continue to feel better!!! :)

Twiggy Rookie

Thanks guy's i appreciate your replies :)

mommida Enthusiast

I never had Celiac officially diagnosed for myself. I have heard people with official diagnoses have had to pay higher life insurance premiums or had problems with "pre-existing" conditions medical coverage.

If gluten free makes you feel better, that is enough of an answer.


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Twiggy Rookie

I am actually amazed at the ammount of people who say to me ''oh i cant tolerate bread either'' it just goes to show how many people are affected even in a slight way by gluten :angry:

Twiggy Rookie

Dratt! I accidently glutened myself on tuesday and ive been payiong the price for the last 2 days......my tummy sounds like a cauldren.....ouch.My family need gass masks <_<

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    • xxnonamexx
      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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