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Recent Activity
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- Maria Deal commented on Scott Adams's article in Celiac Disease Basics7What are the Odds of Developing Celiac Disease based on HLA-DQA/DQB Genotype?
I’m trying to understand this as well. My “results” read “Negative” for the 2 main genes, but in the paragraph it does indeed say I carry another gene and half of another. So I called and asked. Lab said you do not need those 2 main genes to be diagnosed Celiac, it is just less likely. My doctor is trying to get me to eat gluten. I’ve been diagnosed for about 6...- celiac disease
- genetic
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- James47 posted a topic in Coping with Celiac Disease0Alcohol
So as some of you already know I was 47 turning 48 before my diagnosis so a lot and a lot of internal damage. I no longer obviously drink beer unless gluten-free variants of it but does anyone else really struggle when just drink any sorts of alcohol now. I'm really thinking going tea total and avoiding it completely -
- NavyMom replied to Cathijean90's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease7I’m terrified it’s too late for me😭
Hi CathiJean, Wipe those tears my friend. Finding out that you have celiac just gave you the cheat code on how to start feeling better! It may feel like a loss right now, but honestly within 6 months you will start feeling better. Within a year you will look back and wonder how in the world did I survive feeling like that for what feels like a lifetime... -
- trents replied to englishbunny's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms3Negative biopsy and seeking doctor recs in Los Angeles
If you have been eating the gluten equivalent of 4-6 slices of wheat bread daily for say, 4 weeks, I think a repeat blood test would be valid. -
- englishbunny replied to englishbunny's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms3Negative biopsy and seeking doctor recs in Los Angeles
it did include Total Immunoglobin A which was 135, and said to be in normal range. when i did the blood test in January I would say I was on a "light' gluten diet, but def not gluten free. I didn't have any clue about the celiac thing then. Since then I have been eating a tonne of gluten for the purpose of the endoscopy....so I'm debating just getting...
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So as some of you already know I was 47 turning 48 before my diagnosis so a lot and a lot of internal damage. I no longer obviously drink beer unless gluten-free variants of it but does anyone else really struggle when just drink any sorts of alcohol now. I'm really thinking going tea total and avoiding it completely
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Hi CathiJean, Wipe those tears my friend. Finding out that you have celiac just gave you the cheat code on how to start feeling better! It may feel like a loss right now, but honestly within 6 months you will start feeling better. Within a year you will look back and wonder how in the world did I survive feeling like that for what feels like a lifetime? You mentioned 15 years, that's about how long I have been really ill as well. I had told every doctor I saw that I kept getting sick, infections, hair loss, joint pain, etc. and nobody would listen to me until I turned 45. I went in for a colonoscopy and the doc says how often do you have bowel movements and I said usually between 10-15 times a day. Suddenly I had someone actually listen to me and the testing began. What I can tell you is use this forum, talk to peers, read everything you can about how to gluten-free your kitchen, encourage your family to participate in your journey (trust me they love you enough to make the effort), how to order food in restaurants, and how to avoid cross contamination. Accept that you will make mistakes and allow yourself grace as you implement your new normal and have a clear understanding that going gluten free will begin healing your body in ways that you will not even begin to understand until you actually do it. So, have faith that the nutrient deficiencies that you are probably experiencing right now can be corrected and you are on a bright path to feeling SO much better. Think about how incredible your mom journey is about to become as you begin to feel better!! Your kids are going to be amazed at your energy levels, ability to play and go do stuff...you are leveling up knowing that you have Celiac. Knowing gives you power my friend, harness it and have gratitude that it was discovered...even if the docs missed it - you know now and keep moving forward. You got this!!
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If you have been eating the gluten equivalent of 4-6 slices of wheat bread daily for say, 4 weeks, I think a repeat blood test would be valid.
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By englishbunny · Posted
it did include Total Immunoglobin A which was 135, and said to be in normal range. when i did the blood test in January I would say I was on a "light' gluten diet, but def not gluten free. I didn't have any clue about the celiac thing then. Since then I have been eating a tonne of gluten for the purpose of the endoscopy....so I'm debating just getting my blood test redone right away to see if it has changed so I'm not waiting another month... -
Welcome to the forum, @englishbunny! Did your celiac panel include a test for "Total IGA"? That is a test for IGA deficiency. If you are IGA deficient, other IGA test resultls will likely be falsely low. Were you by any chance already practicing a reduced gluten free diet when the blood draw was done?
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