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2 posts in this topic

HI

After 5 years of going to DR to DR, I dx myself with celiac or Gluten sensitivity. My symptoms fit it so well.

Abdominal cramping/bloating. Abdominal distention to the point of being painful. Constipation, Edema, Energy loss, Fatigue. Flatus, Mouth sores or cracks in the corners, Muscle cramping (Especially in the hands and legs) I have terrible leg cramps at night. Skin (Very dry) . Stools (Hard, Small, Foul smelling. Tooth enamel defects. Weakness, Depression, Unable to concentrate, Iron-deficiency anemia,nausea, heart burn, bone pain, abnormal menses, acid reflex, starting to get arthritis in my thumbs, I can go on. If I go gluten free, the systems abate and I feel human again, My legs stop almost the burning feeling, so do my hands, I don't feel so dragged out.

So I go to my DR and he ordered these tests, I have been 80% gluten free for 5-6 weeks now. Yes i cheat and its denial, and as soon as I cheat i am sick, heart burn, nausa,painful cramps about an hour later,

I am over weight (300) and i dont have the diarreha

this was i received from the DR

my glucose fasting is 14H (65-105mg/dl)

Potassium 4.8 (3.5-5.3)

Cholesterol total 236

LDL chol 156

hemoglobin 10.l

hemacrit 32.2

mcv 65.4

mch 20.3

mchc 31.

rdw 18.9

platelet count 484H

Said

mod. anisocytosis

slight hypochrochromasis

slight microcytosis

mod. elliptocytes

platelet estimate increased

vit. 12,folate 741

tissue transglutam AB IGA <20 (<20 neg)

gliadin AB (IGG,A

Gliadin AB (IGA <20

Gliadin AB (IGG) pending

hemoglobin A1c 6.0H %

tissue transglutam AB IGG 3 (<20 neg)

quest labs.

Now the DR says I am not either celiac or gluten sensitive.

but I clear up and feel so much better when i am gluten free,

what could be wrong ? shouldnt I listen to my body, my dr laughed when i said that. He wasnt concerned about the burning feet, hands (its so bad sometimes i lay in bed crying, yes i know its time for a new dr. but what do i do now

Should i do the endolabs?

is being gluten free 80% of the time for 5-6 weeks enough to change the blood results, as i get older i am finding i am allegic to more and more food.

what do i do now

sandi

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Hi Sandi. It's clear that you have been gluten-free and therefore it screwed your work. In order for it to show up (if it will show up) you need to be full time on gluten. I would definately do enterolabs.com. However, if you feel better on a gluten-free diet you pretty much have your answer. Enterolabs will only confirm it and you do not have to be gluten-free for it to show up. Keep us posted.

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    • Thank you so much guys. Reading that last response and those from forum members who seemed to be mind-bogglingly sensitive to gluten at times helps me feel like less of a freak  Perhaps worse than the symptoms themselves was my fear that I'm the only person on earth who has gone through this and that if it continues, I will end up with all of my friends and family washing their hands of me because it would look to them like I'm the only one with this and so I must be crazy. It's really good to hear that the sensitivity can go down too. I've been holding onto this idea through the tough times, reminding myself that I also had really bad hayfever for a few years, and asthma at a different time and they both got better.  It has been a whole month since I had a bad reaction to gluten. It has also been two weeks since I even had a small reaction and I'm feeling SO much better. I'm still going to take every precaution I can but this feels worlds away from how it was. At my most risk averse, I had a day on holiday where I only ate bananas and avocados because I could eat them without them having been touched by human hands, even my own! (This was straight after getting sicker and sicker and hunting down what it was that made me ill. I found the refill bottles of soap in the house where I was staying and read that they had wheat in them - not an airborne reaction I imagine but when I washed my hands to prepare food it was probably contaminating my food. Plus because I didn't speak the language, I couldn't be sure the new soap I bought was gluten free.) Now, I am still avoiding environments with lots of gluten and staying clear of all grains, with the exception of rice which I reintroduced using the food challenge method as directed by my dietician (since I understand that rice is, according to Dr Fasano, the lowest risk of gluten contamination of all the grains) and I am building my weight back up. My husband has been able to see also that the last time he cooked gluten in the house was the last time I got ill. So it is reassuring for him to see that the sacrifice he is making is making such a difference to me. I also took the advice about new cooking utensils - thanks! I have my fingers crossed for me. I want this better health to continue but right now I'm happy to know that there is a break in the clouds and to know that I can feel like me again. Good luck to everyone, sensitive or not, who gets into a bad place with managing their reactions. Hang on in there!        
    • I'm not sure I just had the endoscopy, and I've had a  songram. 
    • Thanks and I'm seeing a doctor in three months may have to make it sooner.    Thanks for all the replies.
    • Hey guys so question. I still am going through some of the motions to finally be diagnosed. I has a really bad case of acid reflux a few days ago and now i feel soo sick. Im still eating gluten because i got a negative biaopsy test but ive been told thag i more than likely still have it because its really hard to detect. Well i drank beer last night and had a poutine today stupid i know and now i feel soooo sick. And only felt really sick after the poutine. Now my question is can your symptoms get worse all of a sudden??  I have many other symptoms thaat read celiac deisease for most of my life. But since all doctors told me you have anxiety ibs and fibro at 28 years old. I just baiscally gave up and figured this was going to be my life feeling like crap for the rest of my life. Any thoughts??? Thanks guys. Sorry for the novel lol
    • A negative result from a biopsy that is. 
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