-
Welcome to Celiac.com!
You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.
-
Celiac.com Sponsor (A1):
Celiac.com Sponsor (A1-M):
-
Get Celiac.com Updates:Support Our Content
Coping with Celiac Disease
Share stories, techniques, and information to help others deal with the disease and the gluten-free diet.
16,219 topics in this forum
-
- 35 replies
- 5.1k views
-
- 4 replies
- 1.5k views
-
- 14 replies
- 1.8k views
-
- 5 replies
- 1.3k views
-
- 5 replies
- 2.4k views
-
- 31 replies
- 4.7k views
-
- 4 replies
- 1k views
-
- 12 replies
- 9.1k views
-
- 7 replies
- 1.5k views
-
Celiac.com Sponsor (A10):
Celiac.com Sponsor (A10):
-
- 7 replies
- 1.9k views
-
- 1 reply
- 1.3k views
-
- 12 replies
- 3.2k views
-
- 17 replies
- 5k views
-
- 18 replies
- 2.2k views
-
- 8 replies
- 1.5k views
-
- 2 replies
- 1k views
-
- 2 replies
- 1.1k views
-
- 13 replies
- 4.9k views
-
- 2 replies
- 884 views
-
- 5 replies
- 1k views
-
- 5 replies
- 719 views
-
- 6 replies
- 3.6k views
-
- 3 replies
- 1.8k views
-
- 11 replies
- 5.5k views
-
- 18 replies
- 2.8k views
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8-M):
-
Get Celiac.com Updates:Support Celiac.com:
-
Celiac.com Sponsor (A17):
Celiac.com Sponsor (A17):
Celiac.com Sponsors (A17-M):
-
Recent Activity
-
- xxnonamexx replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease35Supplements for those Diagnosed with Celiac Disease
I know I haven't been tested for Celiac yet. But If I took a blood test would they be able to say what I am deficient in as far as vitamins and minerals so I can see what supplements to take or is it not that easy to figure out what is needed to balance out vitamins/minerals. -
- trents replied to Shining My Light's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms5Virus, celiac disease or both?
All that is exactly why you should have an endoscopy with a biopsy of the small bowel lining done. It's a very simple procedure and in the US they put you under for it so there is no discomfort. You don't even have to do a cleanout like you do for a colonoscopy. It might also be wise to wait a few months and get the tTG-IGA checked again if nothing... -
- knitty kitty replied to ehb's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease30Refractory Celiac disease - what to do
I understand your exasperation. My doctors were totally clueless. Me? I couldn't believe it was so simple. I had studied nutrition before earning a degree in Microbiology because I was curious about what the vitamins were doing inside the body. It's about giving the body the nutrients it needs to heal. Read my blog for more of my journey... Do... -
- Shining My Light replied to Shining My Light's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms5Virus, celiac disease or both?
@trents - sorry, I know that didn’t make sense. I need to get better at rereading the things I write. The people I know of that have a gluten sensitivity or intolerance have tested negative for celiac. They can’t have gluten of any kind without having a reaction. That to me isn’t helpful. If I reacted to gluten I wouldn’t eat it regardless of it b... -
- trents replied to Shining My Light's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms5
Virus, celiac disease or both?
There are plenty of people with celiac disease walking around who are largely asymptomatic. I was one of them. We call them "silent celiacs" They don't seem to have GI distress or maybe it's so minor and infrequent it's not really noticeable. They can be in that state for years until the damage to the villi progresses to a critical point or they begin to...
-
-
Celiac.com Sponsor (A19):
-
Member Statistics
-
Celiac.com Sponsor (A20):
-
Forum Statistics
-
Total Topics121.3k
-
Total Posts1m
-
-
Celiac.com Sponsor (A22):
-
Celiac.com Sponsor (A21):
-
Upcoming Events
-
Posts
-
All that is exactly why you should have an endoscopy with a biopsy of the small bowel lining done. It's a very simple procedure and in the US they put you under for it so there is no discomfort. You don't even have to do a cleanout like you do for a colonoscopy. It might also be wise to wait a few months and get the tTG-IGA checked again if nothing else. If it elevated now due to some temporary infectious process, it should not remain elevated. But a biopsy would distinguish between IBD and celiac disease. And remember, the diagnosing of diseases is often not a black and white, cut and dry process. You often have to weigh all the evidence and just go with what is most likely the cause. When tTG-IGA is elevated, the most likely cause is celiac disease. And the gold standard test for diagnosing celiac disease is still the endoscopy with biopsy. But if you decide to go for further testing for celiac disease of any kind, you must not first embark on the gluten free diet.
-
By knitty kitty · Posted
I understand your exasperation. My doctors were totally clueless. Me? I couldn't believe it was so simple. I had studied nutrition before earning a degree in Microbiology because I was curious about what the vitamins were doing inside the body. It's about giving the body the nutrients it needs to heal. Read my blog for more of my journey... Do take the time now to make some changes. It's a matter of putting on your own oxygen mask first before you do anything else. I regret I didn't do more to take care of myself first. It's amazing how quickly ones life can unravel if in poor health. Simple things you can do immediately that will help are: Stop consuming oats, dairy, and corn. Keep a food-mood-poo'd journal so pinpointing problematic foods is easier. No alcohol. Avoid nightshades. Do cut back on or eliminate processed gluten free facsimile foods. These are not nutritious. They are not enriched with vitamins and minerals like their gluten containing counterparts. They contain saturated fats and excess fiber that can be irritating to the digestive tract. They are high in simple carbohydrates that promote Small Intestinal Bacterial Overgrowth (SIBO). Do focus on meat, veggies, fruit and healthy Omega 3 fats (olive oil, avocado oil). Do make stews and roasts overnight in a crockpot. Make small batches. Leftovers increase in histamine the longer they are left. Do talk to your doctor about supplementing with a B Complex and Benfotiamine (a form of thiamine shown to promote intestinal healing). There are eight essential B vitamins. They work in concert together like an orchestra, so they need to be supplemented together. Taking extra thiamine and Benfotiamine have been shown to be beneficial. Weight loss can be a symptom of insufficient thiamine. I believe you mentioned you were low in some vitamins. Can you tell me which ones? -
By Shining My Light · Posted
@trents - sorry, I know that didn’t make sense. I need to get better at rereading the things I write. The people I know of that have a gluten sensitivity or intolerance have tested negative for celiac. They can’t have gluten of any kind without having a reaction. That to me isn’t helpful. If I reacted to gluten I wouldn’t eat it regardless of it being celiac or not. I’ve come to learn the real issue with celiac is the damage, not the intolerance. Gliadin Deamidated is another test I’ve seen that I wanted to get done. Also, the genetic testing. HLA-DQ2 and HLA-DQ8. Although my liver levels are not elevated now, I went through a time when they were. I would say maybe 7 years ago. I also had major GI symptoms at that time. They had ordered a EGD then but I chickened out. This makes me even more confused. I would think that if celiac were the cause my liver numbers wouldn’t have improved. Which again makes me think more of IBD being the cause of my TTG levels being elevated. One thing that would make me motivated above all else is the neurological aspect. I’m still trying to dive deeper into that which has me the most interested. I think GI issues are an obvious symptom, it’s the connection in the rest of the body, particularly brain function that is most intriguing. -
There are plenty of people with celiac disease walking around who are largely asymptomatic. I was one of them. We call them "silent celiacs" They don't seem to have GI distress or maybe it's so minor and infrequent it's not really noticeable. They can be in that state for years until the damage to the villi progresses to a critical point or they begin to develop other health issues that they didn't understand were related to celiac disease. With me, I had very little GI distress but my liver enzymes were elevated. Took 13 years to get that run down and connected to celiac disease. Soon as I adopted the gluten free diet, the liver enzymes normalized. I am blessed that no permanent damage seems to have been done to my liver. Long term, unaddressed (with a gluten free diet) celiac disease can damage other body systems besides the small bowel. Another example is neurological damage that is often not reversible. The EMA was the first blood antibody test to be developed for celiac disease. It has largely been replaced by the tTG-IGA. The EMA is more expensive to run as it requires the use of organ tissue I believe. The tTG-IGA is just as effective. "everyone I know that has a gluten intolerance or celiac cannot tolerate gluten at all have tested negative for celiac." Huh?
-
By Shining My Light · Posted
Hi @trents! I feel like relying to a super star with as much of your content I’ve read. Lol. I definitely don’t disagree with you but I think I’m so chicken about another EDG. What do you think about the EMA-IgA test? I’ve read so much at this point I don’t know if I trust anything completely. Even if everything said yes I would still wonder if it was really something else. It really does seem like the possibilities are endless with all of these tests, etc. and then I think I would be extremely frustrated if the EGD came back normal and then I would still struggle whether I should really be eating gluten or not. i’m also wondering how many people I’ve had the same levels I’ve had and it not be celiac I’ve not ran across anyone like that everyone I know that has a gluten intolerance or celiac cannot tolerate gluten at all have tested negative for celiac. I would love to have someone who was a-symptomatic and was confirmed celiac that had an improvement. I’ve had several people tell me if I have no symptoms then I shouldn’t care. I would like to live in that ignorance but every time I want cake it makes me wonder and it’s not a good feeling.
-
