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Help, Is My Girlfriend Having Celiac Disease


jf.houde

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jf.houde Newbie

Hi everyone, my girlfriend and i are trying to find what is her problem exactly. We went to see 5 doctor, in french we called them gastro ent


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kbtoyssni Contributor

Many celiacs have diarrhea, but many also have constipation. The symptoms that doctors most often associate with celiac is malnutrition, weight loss and diarrhea, but recent studies have shown that about 50% of celiacs gain weight. Symptoms can also include joint and muscle pain, difficulty thinking, heartburn, eye twitches, headaches, difficulty sleeping, etc. I would encourage your girlfriend to get tested and try to diet even if testing comes back negative. Traditional medical testing is notorious for false negatives.

jf.houde Newbie
Many celiacs have diarrhea, but many also have constipation. The symptoms that doctors most often associate with celiac is malnutrition, weight loss and diarrhea, but recent studies have shown that about 50% of celiacs gain weight. Symptoms can also include joint and muscle pain, difficulty thinking, heartburn, eye twitches, headaches, difficulty sleeping, etc. I would encourage your girlfriend to get tested and try to diet even if testing comes back negative. Traditional medical testing is notorious for false negatives.

thanks a lot for the info, how do you get tested? I know you can be testes with a blood taking. (not sure how its called) is there anyother ways?

Yesterday we wanted to test if it was a gluten problem, so my girlfriend eated pasta ans bread like never before lol ...and then nothing she was in good form ... but the two past days she was having dificulty to sleep and everything you describe. is it normal taht she react like 2 or 3 days later or as soon as you heat gluten you have consequence.

thanks again

happygirl Collaborator

Ask your doctor to run these blood tests:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

Open Original Shared Link is a good site with more information.

RiceGuy Collaborator
Yesterday we wanted to test if it was a gluten problem, so my girlfriend eated pasta ans bread like never before lol ...and then nothing she was in good form ... but the two past days she was having dificulty to sleep and everything you describe. is it normal taht she react like 2 or 3 days later or as soon as you heat gluten you have consequence.

Yes, a delayed reaction is fairly common. Also there may be a sensitivity to dairy, at least at first. Many report this too.

jf.houde Newbie
Yes, a delayed reaction is fairly common. Also there may be a sensitivity to dairy, at least at first. Many report this too.

yes, before i found the celiac desease we toght i was dairy, and in fact she goes a bit better without airy so we wnt with soya milk aand stuff like that but when it was continuing i've search again and found the celiac disease. thanks for all the comments, we will se in one or two days how she goes ... because yesterday was a gluten trip

jf.houde Newbie
Ask your doctor to run these blood tests:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

Open Original Shared Link is a good site with more information.

thanks we are gonna ask him to test her blood


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jewi0008 Contributor

Kbtoyssni- You said that a symptom is eye twitches? Really? I have never heard that but my eyes for the past several months have NOT STOPPED twitching! It drives me crazy! I feel as though I've had something wrong with me since I developed a rash around my nose when I was about 12 years old. I wonder if the eye twitching is a latent symptom from years and years of continuing to eat gluten?! Thoughts?!

Many celiacs have diarrhea, but many also have constipation. The symptoms that doctors most often associate with celiac is malnutrition, weight loss and diarrhea, but recent studies have shown that about 50% of celiacs gain weight. Symptoms can also include joint and muscle pain, difficulty thinking, heartburn, eye twitches, headaches, difficulty sleeping, etc. I would encourage your girlfriend to get tested and try to diet even if testing comes back negative. Traditional medical testing is notorious for false negatives.
lizard00 Enthusiast
Kbtoyssni- You said that a symptom is eye twitches? Really? I have never heard that but my eyes for the past several months have NOT STOPPED twitching! It drives me crazy! I feel as though I've had something wrong with me since I developed a rash around my nose when I was about 12 years old. I wonder if the eye twitching is a latent symptom from years and years of continuing to eat gluten?! Thoughts?!

It's a vitamin B deficiency. Mine twitched for months. I started taking a B supplement, it went away in a matter of days. It's a symptom because of the malabsorption. Malabsorption=nutrient deficiencies.

HAK1031 Enthusiast

Thanks for the eye twitch info!! My mother's eye has been driving her crazy for a week now. She tested deficient and got a shot, but it didn't do much. Now if only I could convince her that the problem is celiac... and it doesn't help that she had part of her intestine that aids in absorbtion removed due to colon cancer (which is probably celiac related) but I digress

Sorry to thread hiijack, I just was excited to read that! :)

jewi0008 Contributor
It's a vitamin B deficiency. Mine twitched for months. I started taking a B supplement, it went away in a matter of days. It's a symptom because of the malabsorption. Malabsorption=nutrient deficiencies.

Interesting. I have had it for so long. Then, I started with the B Complex and it pretty much disappeared, too. In addition, I have awful mouth problems. My mouth is constantly irritated. My oral tissues drive me crazy. NOT like canker sores or sores just an overall burning, annoying sensation, with occassional extreme teeth pain. This flair also goes down a lot when I'm taking my B Complex. On Friday I forgot to take it and like clockwork yesterday was hell for me. I'm hoping today or tomorrow for some relief!

What B Complex do you take? And does that make sense to you that if I don't take it, for even one day, that all of the twitching/mouth problems, ect would come back full force?

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      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? 
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      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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