-
Posts
1,543 -
Joined
-
Last visited
-
Days Won
49
Content Type
Profiles
Forums
Events
Blogs
Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995
Everything posted by RMJ
-
My TTG IgA came down pretty quickly. The DGP IgA took a while to become normal and took me getting more and more strict about my gluten free diet since I don’t get obvious symptoms from gluten. When eating processed foods I started with foods with no gluten ingredients, then went to foods that were labeled gluten free, then foods that were certified gluten f...
-
There isn’t much research on the use of IvIg for gluten ataxia, so it is fairly experimental at this point. The reason for not starting until celiac antibody levels are normal is because the IvIg could change the results of the antibody tests, not that your antibodies would interfere with the IvIg effects. If it were me I think I’d try to get my ...
-
It has already been discussed in these forums that the GFCO certified products use step down testing, meaning that not every lot of product is tested for gluten. In some cases, after enough passing results, products only need to be tested once each quarter! Manufacturing facilities are supposed to be audited annually. GFCO Step down testing - see pages...
-
Have you experienced gaslighting by doctors?
RMJ replied to Gemz's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
It’s lucky that people with celiac disease can treat themselves, with a gluten free diet, since so many doctors don’t know what they’re doing when it comes to celiac disease. I hope you can get a clearcut diagnosis from the biopsy. If not, just go gluten free anyway and get rid of your symptoms yourself! -
Does it double in size during the rise? Or more? It should probably only double in size during the rise, then it should rise more during the first part of the bake. To the top of the tin might be too much depending on the size of your bread tin. Does the mix specify the size of the tin? One hour might be too long if your kitchen is warm.
-
Could you be overproofing it, and then it collapses? There’s a wonderful Gluten Free Bread Home Bakers group on a social media site (not sure if I’m allowed to mention or link to it here?). They have a file of recipes. People post pictures of the inside of their bread to get advice.
-
DR1-DQ5 neurological symptoms
RMJ replied to Murilo P's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
I’m glad you’re seeing improvement! I hope she gets better and better. -
Since a biopsy isn’t an option, I think both of us are suggesting you see if changing the amount of gluten you eat changes the antibody levels. Trents is suggesting you try eating more, I’m suggesting that you try eating less - especially if cutting gluten from your diet makes you feel better. If there is a correlation it indicates celiac disease.
-
Trents and I are suggesting two different things. I suggested gluten free for six months to see if the results went down without gluten. For that you would not do a gluten challenge. If you want to see what the results would be if you ate more gluten you could start that gluten challenge that trents suggested right now.
-
Possible Celiac Disease
RMJ replied to Sherm11's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Can you get on a list to be called for an earlier procedure if someone else cancels theirs? In the meantime, you could enjoy eating all of your favorite gluten-containing foods, in case the diagnosis is celiac disease and you have to give them up after the endoscopy. -
Newbie: Asymptomatic Celiac
RMJ replied to Beckyepg's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
I go to a specialist, but that seems to be the way the healthcare system I use works. The job of primary care seems to be to send people to specialists. -
Newbie: Asymptomatic Celiac
RMJ replied to Beckyepg's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
I am also a silent celiac. I have to go by my annual blood tests for celiac antibodies to see if my diet is sufficiently gluten free. In order to keep the antibodies in the normal range I have to pretty much stick to certified gluten free foods if I eat processed foods. -
The best way to investigate the unexpected results would be at the laboratory that got those results. An accredited laboratory likely has a procedure for laboratory investigations which would involve reviewing how the tests were run, and possibly redoing tests on retain samples if procedures were not correct. Such an investigation takes time and dollars....
- 70 replies
-
Actually, in both cases they are criticizing the testing laboratory. A big issue they had with the Cheerios testing was that the company said they took 12 samples (good) but then mixed them together prior to testing such that if there were a slight hot spot it would be diluted and possibly not detected. Mixing samples like that is NOT considered good...
- 70 replies
-
Good for your doctor in ordering a complete celiac panel! Many just order TTG IgA. The four celiac tests are all normal, i.e. not indicating celiac disease (as long as you were eating gluten prior to the tests). I’m not sure why the lab said low total IgA was suspected, but even if the total IgA was low, the correct tests were done to account for that. ...
-
Here is an update from Gluten Free Watchdog, indicating that the high results on at least one item may be false positive. I am a scientist and used to develop ELISAs, the type of test used. Non-specific binding such as is described can be a real problem with these tests, so this is a scientifically reasonable explanation. possibly false positive
- 70 replies
-
Per this article it is possible. Look under “Etiology.” Intestinal lymphangiectasia
-
SF Bay Area Celiac Treatment
RMJ replied to Hawk4's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
I hope you can find the help you need. Have you stopped eating oats and dairy? -
SF Bay Area Celiac Treatment
RMJ replied to Hawk4's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
What sort of management and treatment are you looking for? The only treatment is a gluten free diet. You may get better support on this forum than from any doctor. My celiac specialist likes to see me once a year but just orders antibody tests and sent me to a dietician when I requested that. -
Understanding Test Results
RMJ replied to Jennie6308's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
I’m not sure what you mean about using Mayo Clinic’s guidelines to put your TTG IgA as a weak positive. Results should be compared to the standard range of the lab doing the test, because different labs use different units. So per Quest, your TTG IgA is negative and IgG is positive and fairly high. It is great that your doctor ordered the full pan... -
Some blood tests are very specific for celiac disease. Without more information on exactly what blood test was run it is difficult to say what yours could indicate. I haven’t seen the terminology “level” used in describing celiac blood test results before. Were you seeing a dermatologist for a rash? Were they looking for dermatitis herpetiformis, whic...
-
Celiac newbie
RMJ replied to Matt8949's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
For an accurate diagnosis you should continue to eat gluten until you have the endoscopy. How long have you been gluten free?