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- trents replied to Jula's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease1Preliminary diagnoses via blood test in 2009; Is biopsy confirmation worth the contamination required?
Jula, welcome to the forum. What possible benefit would having an official diagnosis give you at this point in your life? You already have medical test evidence that you are a celiac (antibody tests and genetic testing) and the symptom improvement when you went off gluten confirms what the testing already pointed to. Why on earth would you risk damaging... -
- Jula posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease1Preliminary diagnoses via blood test in 2009; Is biopsy confirmation worth the contamination required?
I will admit that when I was told I would have to eat gluten before getting the biopsy that would definitively diagnose Celiac for me, I was kind of psyched when I thought of all the things I would eat and enjoy since going gluten free in 2009. I was diagnosed that year after the results of tissue transglutaminase testing combined with persistent anemia... -
- trents replied to ellieb13's topic in Dermatitis Herpetiformis1
Eczema or dermatitis herpetiformis
Welcome to the forum, @ellieb13! The third party commercial celiac test kits are reliable but suffer from the same shortcomings that the average physician ordered celiac testing does. Namely, the number and kinds of tests included is pretty limited, usually just one or two antibody tests as opposed to a complete panel. Some who do have celiac disease... -
- ellieb13 posted a topic in Dermatitis Herpetiformis1Eczema or dermatitis herpetiformis
Hi, I've feel like I've hit a brick wall. I've had eczema as a child and have mostly grown out of it, with an occasional flare-up (once a year at most). However, this time around none of the usual tactics work. I use a soap substitute, use 100% cotton clothing, even changed my mattress. The topical steroid given by the doctor usually does the trick after... -
- knitty kitty replied to Barcino's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease3Antibodies went up
@Barcino, Yes, do try cutting out dairy. About half of people with Celiac Disease react to the protein in dairy, Casein, the same as to gluten because of similar protein segments. Others have Lactose intolerance because their damaged intestinal lining, the villi, are damaged and can't produce the enzyme lactase which breaks down the sugar in dairy...
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0December 11, 2024 12:00 AM
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Jula, welcome to the forum. What possible benefit would having an official diagnosis give you at this point in your life? You already have medical test evidence that you are a celiac (antibody tests and genetic testing) and the symptom improvement when you went off gluten confirms what the testing already pointed to. Why on earth would you risk damaging your health by going back on gluten to get further confirmation of what you already have proved? You are now 15 years older than when you first went gluten free and your body will not tolerate the abuse it would back then. Call your GI doc and tell him you have decided to proceed as you are without the gluten challenge. If you want to go forward with the endoscopy to check for upper GI health in general, I can understand that but I certainly would not go back on gluten just to enhance the chance that you will receive additional confirmation of what you already know to be true. Are you having any other upper GI issues that you want to get scoped for? Having said all that, it sounds like you may need to double down on your efforts to eat gluten free and now have the freedom to do that since you aren't any longer caring for your parents. -
I will admit that when I was told I would have to eat gluten before getting the biopsy that would definitively diagnose Celiac for me, I was kind of psyched when I thought of all the things I would eat and enjoy since going gluten free in 2009. I was diagnosed that year after the results of tissue transglutaminase testing combined with persistent anemia (blood work also measured this) and a skin rash that definitely turned out to be gluten related (dermatitis herpetiformis) although it was never biopsied. For various reasons, I was never able to go for any follow-up testing, including the biopsy, as recommended by the diagnosing physician. I did, however, immediately go gluten free as much as humanely possible. There were a number of contaminations over the years as I was caring for parents who were not gluten free and who were going through enough so I did not feel good about depriving them of many of the things the loved to eat. I am about to have my first endoscopy, primarily to assess any damage that has been done to my small intestine over the years and to establish a baseline, but I thought it would also be a good time to do the biopsy and get the definitive diagnosis. My gastro doc agreed. But then his office called to say I would have to consumbe gluten for 6 weeks prior to the surgery. I freaked. I couldn't imagine feeling that bad for that long and couldn't figure out how I would function. I thought I would have to eat a meal or two, especially being that I have become more sensitive and can feel the impact of someone stirring my gluten-free pasta water with the spoon from their lots-o-g pasta. It usually takes 2-3 week to get rid of all of the symptoms, but if the dermatitis herpetiformis comes back, that remains for months or more, depending on the weather, my stress level (I tend to give in for the need to scratch the insane itch more) and a few other things. I spoke to my Gastro and we negotiated down to 7-10 days of gluten eating, but he was not sure it would give him all of the info he needs for the biopsy/diagnosis and I am increasingly worried that, judging how eating gluten shut me down, caused my asthma to get worse, my moods to swing wildly and to become so bone tired and joint sore that I couldn't make it up the subway stairs and so sat down and immediately fell asleep for about 10 minutes before someone shook me awake ---- all of which caused me to have someone look into what was going on with me, being that my doc at the time kept diagnosing different symptoms as issues and trying to give me more pills to treat them all. None of that helped. Going gluten free did. I also found out I have at least one of the genetic markers for celiace. I was adopted, so I didn't have that info before. I know this is not a unique story for people with Celiac pre-diagnosis. My question is: Will having an unquestionable diagnosis from the biopsy be worth ending this and starting next year feeling like crap, barely being able to function, likely depressed and a bit manic, and too tired and sore to move much at a time I have been battling to have my life back after being a very long term, 24/7 caregiver for my parents and getting lost in the serious shuffle of all that? Thank you to all of you who take the time to read and especially to those that take the time to respond and help me out of my vacuum! I need some perspective on this, please, because I am becoming increasingly anxiety-ridden about this but I want to do what will be the most beneficial to me in the long term. Thoughts?
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Welcome to the forum, @ellieb13! The third party commercial celiac test kits are reliable but suffer from the same shortcomings that the average physician ordered celiac testing does. Namely, the number and kinds of tests included is pretty limited, usually just one or two antibody tests as opposed to a complete panel. Some who do have celiac disease have immune systems that respond atypically to the usual tTG-IGA testing that most docs order and so are missed. If IGG antibody tests would have also been ordered they might have been detected. I could be wrong but I think there is also the issue that sometimes those with dermatitis herpetiformis do not have enteric involvement and do not produce serum IGA antibodies of the kind the tests are looking for. These people can only be diagnosed by skin biopsy during a dermatitis herpetiformis outbreak. Perhaps another forum member with more knowledge in this area can check my thinking here. Don't misunderstand me, I'm not trying to discourage you from opting for the commercial third party do it yourself kit. If you can afford it, go for it! I'm just trying to help you understand the limitations of such testing, particularly in your situation.
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Hi, I've feel like I've hit a brick wall. I've had eczema as a child and have mostly grown out of it, with an occasional flare-up (once a year at most). However, this time around none of the usual tactics work. I use a soap substitute, use 100% cotton clothing, even changed my mattress. The topical steroid given by the doctor usually does the trick after a few days but everytime i stop, it returns quickly. This doesn't feel like eczema to me as it is on my back, buttocks, neck and elbow whereas all my other flare-ups have mainly been on the backs of my knees and inside of elbow. My Grandmother is being tested for celiac disease in the coming days due to her "eczema" not responding fo treatment also. There are some celiac in the family but not close (grandfather's sister). Is this a possibility? I'd love to hear your thoughts and experiences. I would like to add that it's incredibly hard to get a GP appointment at the moment too so would the online home testing kits be a reliable testing option, or just a quick buck scheme? Many thanks 😊
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By knitty kitty · Posted
@Barcino, Yes, do try cutting out dairy. About half of people with Celiac Disease react to the protein in dairy, Casein, the same as to gluten because of similar protein segments. Others have Lactose intolerance because their damaged intestinal lining, the villi, are damaged and can't produce the enzyme lactase which breaks down the sugar in dairy, Lactose. Also, cut out processed gluten free foods. Many gluten free processed foods use corn. Some people with celiac disease react to corn the same as to the protein gluten because of similar-to-gluten protein segments of maize, the protein in corn. Processed foods containing corn may also utilize microbial transglutinaminase to bind corn proteins together to improve texture. Microbial transglutaminase is also used in dairy products like yogurt and ice cream to bind dairy protein casein together to improve texture. Microbial transglutinaminase is not required to be listed as an ingredient because it is an enzyme considered to be part of the manufacturing process. The increasing usage over the past couple of decades of microbial transglutaminase to cross link gluten proteins together in wheat containing products is suspected to be a trigger of Celiac genes, hence the increased numbers of people being diagnosed with celiac disease recently. Do consider supplementing with Benfotiamine, a form of Thiamin Vitamin B One, that has been shown in scientific studies to promote intestinal healing. It also helps acne along with Niacin Vitamin B 3. Vitamin D helps lower inflammation, and Vitamin C helps rebuild and repair damage. I've had great improvement following the Autoimmune Protocol diet. The AIP diet has been scientifically shown to improve intestinal health, too. Developed by Dr. Sarah Ballantyne, a Celiac for her Celiac children. It really does work quickly to reduce inflammation. Although terribly strict, improvement happens within a few weeks. Hope this helps. Keep us posted on your progress!
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