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- knitty kitty replied to Tyoung's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease8Increasing symptoms after going gluten free
@Pasballard, Keep in mind those gluten free processed snacks are not required to have vitamins and minerals added to them to replace vitamins lost in processing like gluten containing products. We need the eight essential B vitamins to turn those carbs into energy to fuel our bodies and make enzymes that sustain life. Sudden weight gain (or weight... -
- knitty kitty replied to WildFlower1's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms11
Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!
Welcome to the forum, @WildFlower1, Here's an article that explains about the updated gluten challenge guidelines. Be sure to read the comments below the article. Have you been checked for nutritional deficiencies? Low iron can affect antibody production, causing false negatives on antibody testing. Do you currently struggle with low iron? ... -
- trents replied to WildFlower1's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms11Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!
I would continue with your gluten challenge for another 2-3 weeks with the increased intake of gluten as outlined above. You now say if you were confirmed to have celiac disease you would be even more strict about avoiding cross-contamination whereas in your first post you said, "Previously for many years 10+ I have been on a strict gluten free diet... -
- WildFlower1 replied to WildFlower1's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms11Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!
Thanks for your response! Yes, you’re correct that many of my symptoms improved when I went gluten-free, but issues like bone loss, infertility, hair loss, etc., seem to be the ones that haven’t responded. I’ve been on the gluten challenge for almost 7 weeks now, and I’m wondering how long I should continue it before testing again and making a final decisio... -
- Scott Adams commented on Scott Adams's article in Spring 2025 Issue3The Ultimate Guide to Dining Out Gluten-Free: Tips and Restaurant Picks (+Video)
My daughter is very sensitive and has DH, yet Chipotle is one of her go to places for fast gluten-free food. Did you follow the recommendations in this article:- dining
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By knitty kitty · Posted
@Pasballard, Keep in mind those gluten free processed snacks are not required to have vitamins and minerals added to them to replace vitamins lost in processing like gluten containing products. We need the eight essential B vitamins to turn those carbs into energy to fuel our bodies and make enzymes that sustain life. Sudden weight gain (or weight loss) can be symptomatic of Thiamine Vitamin B1 deficiency. Thiamine is the B vitamin with the shortest storage time, and so thiamine deficiency shows up first with vague symptoms like weight gain or loss, fatigue, not sleeping well, achy or cramping muscles, digestive issues and headaches. Taking vitamin and mineral supplements helps boost your body's ability to absorb these nutrients which keeps our bodies healthy. B Complex vitamins and Vitamin D (which regulates inflammation) are usually low in people with Celiac disease. Talk to your doctor and nutritionist about supplementing. -
By knitty kitty · Posted
Welcome to the forum, @WildFlower1, Here's an article that explains about the updated gluten challenge guidelines. Be sure to read the comments below the article. Have you been checked for nutritional deficiencies? Low iron can affect antibody production, causing false negatives on antibody testing. Do you currently struggle with low iron? Low Vitamin D can cause amenorrhea, cessation of menstrual periods. Correcting nutritional deficiencies is a big part of Celiac disease. We don't absorb well the eight essential B vitamins and other vitamins and minerals like calcium, resulting in osteopenia, hair loss, infertility, and neurological symptoms. Unfortunately, doctors are not given much training in nutritional deficiencies and don't recognize the connection with the malabsorption of Celiac disease. We get very frustrated here with doctors ordering us to put a harmful substance in our bodies in order for them to say "that makes you sick". Duh, we know that already. Do try to increase your consumption of gluten for at least two weeks before retesting. Eat the chewy kinds of breads. Cookies and cakes don't have as much gluten in them as those chewy artisan breads and thick pizza crusts. I admire your tenacity at continuing the gluten challenge. Do keep us posted on your progress. We'll continue to support you on your journey to diagnosis and recovery. -
I would continue with your gluten challenge for another 2-3 weeks with the increased intake of gluten as outlined above. You now say if you were confirmed to have celiac disease you would be even more strict about avoiding cross-contamination whereas in your first post you said, "Previously for many years 10+ I have been on a strict gluten free diet." Those statements seem to contradict one another. The celiac community as a whole understands that to be "on a strict gluten free diet" necessarily involves significant attention to cross-contamination. If you have not been strict with regard to CC up to now, it is difficult to say how that may have compromised your recovery and contributed to ongoing symptoms. Yet, even a significant reduction that falls short of gluten free can yield negative test results.
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By WildFlower1 · Posted
Thanks for your response! Yes, you’re correct that many of my symptoms improved when I went gluten-free, but issues like bone loss, infertility, hair loss, etc., seem to be the ones that haven’t responded. I’ve been on the gluten challenge for almost 7 weeks now, and I’m wondering how long I should continue it before testing again and making a final decision. I understand the benefits of eating gluten-free long-term, but I’m unsure how much longer to stick with the challenge to avoid another false negative celiac blood test. What I would do differently if the test were confirmed positive is I’d receive a small amount of government help with gluten-free foods as a confirmed celiac. Doctors would be able to rule out further exhaustive testing. I’d also become even more strict about avoiding cross-contamination (for example, when eating at someone’s house, they may say something is safe, but it could have been cross-contaminated with gluten, or when going out to restaurants, they might say it’s fine, but it really isn’t). So, I would be extremely strict with cross-contamination if I were 100% confirmed as celiac, even though I’ve tried to be over the years but still seem to get sick. Any advice on how long is typically recommended to continue the gluten challenge to avoid a false negative on the celiac blood test would be greatly appreciated! -
Okay, it does make sense to continue the gluten challenge as long as you are already in the middle of it. But what will change if you rule it out? I mean, you have concluded that whatever label you want to give the condition, many of your symptoms improved when you went gluten free. Am I correct in that? According to how I understand your posting, the only symptom that hasn't responded to gluten free eating is the bone demineralization. Did I misunderstand? And if you do test positive, what will you do different than you are doing now? You have already been doing for years the main thing you should be doing and that is eating gluten free. Concerning how long you should stay on the gluten challenge, how many weeks are you into it already?
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