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Recent Activity
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- AuntieAutoimmune posted a topic in Traveling with Celiac Disease0Royal Caribbean Only, Please
Hi, Everyone, My husband and I are contemplating an RCL cruise and would like to hear from anyone who has sailed on RCL. Please do not post information on other cruise lines. We are either going on Celebrity (which we've sailed many times and know is good—we don't need any information) or Royal Caribbean. So, RCL only, please, and only those who have a... -
- Scott Adams replied to cameo674's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms4Testing positive for antibodies, are there visible changes to the colon that could be seen without a biopsy?
This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. -
- trents replied to cameo674's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms4Testing positive for antibodies, are there visible changes to the colon that could be seen without a biopsy?
There are third party home test kits for celiac disease that do not involve needles. They use a cheek swab I believe. The cost is a little over $100 USD I believe for most of them. A 7 week "gluten challenge" should be more than enough. The absolute minimum according to guidelines is 2 weeks but I would not cut it that close. I usually recommend four... -
- cameo674 replied to cameo674's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms4Testing positive for antibodies, are there visible changes to the colon that could be seen without a biopsy?
Thank you, Trents. This is exactly why I ask questions. The reference range was anything over 15 was out of range for all 3 antibody tests where I was out of range, Tissue Transglutaminase (IgG)<1.0 was the top of the normal range and 47-310 is the range for the IgA. I started limiting my gluten (American Grains) exposure in 2020 when my daughter... -
- Scott Adams replied to Liamclarke's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease4
Did I outgrow celiac
Celiac disease is a lifelong autoimmune condition. Unlike some food allergies, which children may outgrow, celiac disease does not go away. Even if you don’t experience immediate symptoms after consuming gluten, it doesn’t mean the disease is gone. The absence of symptoms does not equal safety. Gluten can still be causing damage to your small intestine, ev...
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Posts
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By AuntieAutoimmune · Posted
Hi, Everyone, My husband and I are contemplating an RCL cruise and would like to hear from anyone who has sailed on RCL. Please do not post information on other cruise lines. We are either going on Celebrity (which we've sailed many times and know is good—we don't need any information) or Royal Caribbean. So, RCL only, please, and only those who have already sailed. Thanks! -
By Scott Adams · Posted
This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. -
There are third party home test kits for celiac disease that do not involve needles. They use a cheek swab I believe. The cost is a little over $100 USD I believe for most of them. A 7 week "gluten challenge" should be more than enough. The absolute minimum according to guidelines is 2 weeks but I would not cut it that close. I usually recommend four weeks but the more the better in so far as ensuring valid testing. "My daughter was told by her doctor to eliminate american grains due to the fortifying process." What's this about? Are you referring to the vitamins and minerals added to processed cereal grain products in the USA? Is this supposed to be harmful according to this doctor? What kind of doctor is this? MD? Naturopath? What is interesting is that when people go gluten free they often need to supplement with vitamins and minerals to compensate for the loss of vitamins and minerals they were getting in wheat products. Most gluten free facsimile flours are nutritionally bankrupt. Yes, there is a significant statistical correlation between Hashimotos and celiac disease. Autoimmune disorders tend to cluster. Omeprazole and other PPI meds are concerning when used long term in that they raise gut PH (lower acidity) and inhibit the digestion and assimilation of nutrients. They are some of the most over prescribed and under monitored meds in all of pharmacology. I was on Omeprazole for years and weaned myself off it. It was a real fight because of rebound. I bridged with TUMS which is much better option when used for spot coverage. The interesting thing is, a lot of GERD is actually caused by hypoacidity rather than hyperacidity. If you have a lot of GERD you might want to look into MCAS (Mast Cell Activation Syndrome)/histamine intolerance which is another medical problem very common in the celiac community.
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Thank you, Trents. This is exactly why I ask questions. The reference range was anything over 15 was out of range for all 3 antibody tests where I was out of range, Tissue Transglutaminase (IgG)<1.0 was the top of the normal range and 47-310 is the range for the IgA. I started limiting my gluten (American Grains) exposure in 2020 when my daughter tested homozygous for the MTHFR gene so the numbers in 2024 are definitely reduced from what they probably were in 2020. My daughter was told by her doctor to eliminate american grains due to the fortifying process. I have been changing up my diet since 2018 when I could not stay out of the bathroom. I attributed my stomach issues a generic medication that I had been taking for my lymphedema since they started at the same time. I had gone from being unable to use the bathroom to being unable to leave the house with spare clothes. I mostly stick to a protein and a vegetable for my meals now-a-days. Gluten exposure is usually through family events. I just added pre and probiotics into my diet in 2024 because of gerd like issues that I was told was related to another gene issue. I am trying to stop eating tums and Omeprazole like they are candy. I have Hashimoto’s so I always thought my ANA Pattern/Titer scores were just pointing to the thyroid issues not any other conditions. I will make sure that I restart/guarantee my gluten intake at the end of April before my June appointment. 7 weeks should be enough? Though 6 pieces of bread a day is a lot higher than I have ever consumed. I will prompt the kids to start their journeys. They all have stomach issues, but their doctors were attributing them to various other reasons since no one in our family has ever been diagnosed with celiac. Anxiety was always what the doctors said their stomachs hurt so they eat tums alot too. Thank you again for your anatomy help. The people who I have personally known that had a celiac diagnosis got so sick when they accidentally consumed gluten that I never considered that I might have it myself. I would not have done the test myself if my daughter wasn’t so anxious about needles.
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By Scott Adams · Posted
Celiac disease is a lifelong autoimmune condition. Unlike some food allergies, which children may outgrow, celiac disease does not go away. Even if you don’t experience immediate symptoms after consuming gluten, it doesn’t mean the disease is gone. The absence of symptoms does not equal safety. Gluten can still be causing damage to your small intestine, even if you don’t feel it right away. As @trents mentioned, this is called "silent celiac disease," where there is internal damage without obvious symptoms. The fact that you didn’t react to the wheat-containing cookie or the donut doesn’t mean you’ve outgrown celiac disease. It’s possible that your body didn’t react strongly at that moment, but repeated exposure to gluten could lead to long-term complications, such as nutrient deficiencies, osteoporosis, or other autoimmune conditions. The damage caused by gluten can be cumulative, even if symptoms aren’t immediate. Your doctor’s suggestion to “experiment” is concerning. Celiac disease should never be tested by intentionally consuming gluten unless it’s under strict medical supervision for diagnostic purposes (like a gluten challenge before testing). Even then, it’s risky and can cause significant harm. If you’re curious about whether your celiac disease is still active, the best course of action is to consult a gastroenterologist and undergo proper testing, such as blood tests (tTG-IgA) or an endoscopy with biopsy, rather than self-experimentation. Your mom’s skepticism is understandable and warranted. Celiac disease requires strict, lifelong adherence to a gluten-free diet, even if you feel fine after eating gluten. It’s not worth risking your long-term health for a donut or cookie, no matter how delicious they may be. I strongly encourage you to avoid gluten entirely and continue following a strict gluten-free diet. If you have further questions or concerns, please discuss them with a healthcare professional who specializes in celiac disease.
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