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nekome added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsEndoscopy Tomorrow!Hi everyone!
I posted back in January about looking into getting a second opinion. My problems with gluten really surfaced late last summer and I saw a gastroenterologist who did an endoscopy on me last December-- he said everything was fine and I wasn't convinced so I decided to go to another doctor this time making absolutely sure they specialized in Celiac (and where better than the Columbia Celiac Center?).
Ever since January, I've been on a gluten challenge though I've been bad about being consistent in poisoning myself and also bad with getting minimum amounts. I guess most of the time my body just goes on autopilot and wants to eat gluten free. I worry I may not have done the challenge correctly.. but I wouldn't do this again. It's been a long, long journey since I started and regardless of what the results are tomorrow I learned a lot about myself.
It has been confirmed that I have the DQ8 gene. A hydrogen breath test came out positive for fructose intolerance. (I was so worried about gluten, I didn't even think about anything else!) I will be cutting out gluten for sure.
I went through all this for my family so that perhaps I could help someone suffering from digestive issues. I just got engaged so this experience is all the more poignant to me.
Even if I wish it didn't take me being sick for a while, I am thankful for the changes the process has brought about. My desire to build my health has never been stronger. After a lifetime of being in bad shape both physically and mentally, I feel like freedom is more in my grasp than I ever thought possible.
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nekome added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsShould I Get A Second Opinion?Hi everyone, I've been reading these forums for some time now and after going through a stressful year of trying to determine if I have celiac or not. A little bit about myself-- I've had eczema (in the form of what looks like bubbles under the skin that are extremely itchy on hands and feet typically), randomly swelling joints (hands, feet, knees and lasts for days making it quite painful to walk/move around), and hormonal imbalances which caused irregular periods for as long as I can remember. Since last year, I've been experiencing constipation, diarrhea, feeling really fatigued (regardless of sleep and trying to eat a nutrient rich diet along with taking multi vitamins), moodiness (almost as if it were depression) on a nearly daily basis plus the eczema suddenly started to spread over other parts of my body and the joint swelling seemed more frequent. Top that with my hair rapidly thinning no matter what I tried, and needless to say I was extremely worried. I was exercising regularly, eating healthily (mostly eating lean protein, lots of vegetables and fruits, and whole grains), and drinking 3 liters of water a day yet the symptoms were still there.
I went ahead and ordered an Entero Lab test in August and here are the results:
Gluten/Antigenic Food Sensitivity Stool/Gene Panel
Fecal Anti-gliadin IgA 185 Units (Normal Range is less than 10 Units)
Fecal Anti-casein (cow’s milk) IgA 46 Units (Normal Range is less than 10 Units)
Fecal Anti-ovalbumin (chicken egg) IgA 19 Units (Normal Range is less than 10 Units)
Fecal Anti-soy IgA 19 Units (Normal Range is less than 10 Units)
HLA-DQB1 Molecular analysis, Allele 1 0302
HLA-DQB1 Molecular analysis, Allele 2 0502
Serologic equivalent: HLA-DQ 3,1 (Subtype 8,5)
As of the middle of August when I got the results, I completely stopped eating gluten and acted as if I had Celiac. I found that my symptoms improved but I still wanted to get an official diagnosis not just for myself but for my family.
I went to my PCP in November and he ran a blood test panel telling me that I had no antibodies to gluten, only very mildly so for dairy and eggs. He suggested I stay off dairy and eggs for a week and see if my condition improved. But in terms of any kind of gluten intolerance or Celiac, he said I didn't have either. So, I started eating gluten again for that week. Towards the end of it, I woke up with my body covered in very itchy rashes that lasted the entire weekend. (This on top of my usual symptoms) I spoke to my PCP and asked him to look at the Entero results just in case and then he referred me to a GI that he said specialized in Celiac. After meeting with the GI, he told me that about a week before the biopsy, I should start eating gluten so I basically tried to OD on it for that week.
I finally had a biopsy done in early December after being gluten free from the middle of August to November, then on gluten for a week after the initial blood test, then back off gluten until the week before the biopsy, and since the biopsy I'm gluten free again.
The GI got back to me and said that my small intestine "looks fine, very good in fact" and that I have intestinal metaplasia-- there's just inflammation in my stomach (didn't say to what degree). Confusing since I don't eat spicy foods, I barely drink alcohol, no coffee (though I do drink tea that has caffeine about 2 times a week), and don't really eat too much acidic foods.Though he did say that I do have a gluten sensitivity as reported by the Entero Lab results and I don't necessarily have to avoid gluten but if it makes me feel better, then I should stay off it.
I'm thinking of getting a second opinion at the Celiac Disease Center in NYC. Do you think given my case there may have been a possibility that I got false negatives? I did eat gluten those two weeks and experienced symptoms but apparently there was no damage? Should I try to gluten challenge myself for longer and then try to get a diagnosis again?
Thanks for reading, I know it was pretty lengthy. This whole experience has just been very stressful and I don't know anyone that I can speak to that understands gluten intolerance or Celiac disease.
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