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- Kathleen JJ replied to Kathleen JJ's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms8Options - 7 year old boy - Helicobacter pylori and serology
@cristiana Do you have any suggestions for the gummy bear type of candy? Because that is what is getting passed around. Someone told me "you will have to read all labels thoroughly from now on" but to be honest: I don't know what I'm looking for that should or should not be there? And is the notion "gluten free" trustable? And what about "may contain... -
- Kathleen JJ replied to Kathleen JJ's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms8
Options - 7 year old boy - Helicobacter pylori and serology
@trents The first thought indeed I had was 'thank god it's not cancer' and of course, there are many, many, many worse diagnoses to get. But this doesn't mean it doesn't come as a shock. I read a lot of the time 'the most common symptoms are...' and then all the things he doesn't have, but never do I find a list of less common symptoms (bar @Wheatwackeds... -
- Wheatwacked replied to Rosyjo11's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms6Has anyone found Ozempic affected their symptoms?
Could be the Ozampic is masking your expected symptoms. Like an analgesic masks pain. Qzampic slows digestion to lower the rate glucose enters the intestine to slow its effect on glucose level. It seems it might also slow down the gluten entry into the intestine, reducing its trigger level for the antibodies. Ultimately the damage from gluten is the same... -
- Wheatwacked replied to Kathleen JJ's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms8
Options - 7 year old boy - Helicobacter pylori and serology
You can sell it better if the whole family does gluten free. If he does have Celiac Diease, it is genetic so either you, your spouse, or both have a 40% chance of also having Celiac. There are over 200 non classic symptoms also caused by celiac disease not often considered by doctors. Joint pain, muscle pain, muscle cramps, osteoporosis, and allergies for... -
- Wheatwacked replied to MHavoc's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms1
On the cusp of facing a new life of managing a life with Celiac Disease
Hello @MHavoc, thank you for your question and welcome to the clinic. First, has the contstipation abated with the GFD? If your are pursuing further diagnostics you must continue to eat gluten. Each lab has their own reference range for their test, but they indicate an H for high. Typically anything above 11 is considered positive. Mild...
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0December 11, 2024 12:00 AM
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Posts
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By Kathleen JJ · Posted
@cristiana Do you have any suggestions for the gummy bear type of candy? Because that is what is getting passed around. Someone told me "you will have to read all labels thoroughly from now on" but to be honest: I don't know what I'm looking for that should or should not be there? And is the notion "gluten free" trustable? And what about "may contain residual gluten"? Is that safe? -
By Kathleen JJ · Posted
@trents The first thought indeed I had was 'thank god it's not cancer' and of course, there are many, many, many worse diagnoses to get. But this doesn't mean it doesn't come as a shock. I read a lot of the time 'the most common symptoms are...' and then all the things he doesn't have, but never do I find a list of less common symptoms (bar @Wheatwackeds examples - and also non of these are present). I get that severe pains can be a symptom, though the fact that they were omnipresent for 10 days (the exact time his viral values were up) and then 6 weeks later 1 episode also when the family was going through a stomach bug, and since then (nor ever before) none, this logically seems more related to a virus then a symptom of Coeliac, as I'd think this would have to be more present on a regular basis? He always has loved gluten-containing food and at that time was rather having less of it (due to the bug and feeling a little under the weather so eating more yoghurt and the likes then cookies) then more of it. It just doesn't sound all that logical. That being said, I comprehend AND accept that things can not always be logical. I am trying to understand what you are saying about the tolerance - so as long as he eats gluten, he will have some tolerance to it, but when he stops, and say accidentally ingests something, he will react more as the tolerance is lower? It sounds so illogical (hmm, I see a pattern with myself: really looking for logic in a very illogical condition). And how do you interpret the values very 6 months as you maybe don't know there has been an accidental intake? Do the values ever go down to zero or is it a question of getting them mainly lower and can they never go down to normal rates? Normally results of his biopsy are coming in on monday, a little chance they come in today. I've been checking my mail every 10 seconds 🤦🏻♀️, this will not be a productive working day I fear 🙄. Then we know the values, but we only have an appointment with the specialized pediatrician and dietitian on December 6d (which in Belgium is a children's holiday comparable to Santa Clause). So we'll get the full "introduction" to the disorder and approach then. I did talk to the pediatrician and gastrointestinal doctor who did the gastroscopy asking their advice about a plan I was having: to wait to start the diet after the holiday season, we will be abroad in a hotel and to start there in this very new world feels quite stressful for us, but even worse: it will start this journey in a lot of negativity. So our plan is to have a "yummy" party after we return from our trip, during Christmas holidays, inviting some of his friends and buying and making a vast array of gluten free goodies and having them sample and score it. This way it feels like a festive thing AND we can immediately find some things (hopefully) he genuinely like. Both doctors agreed with this approach as this was truly an accidental find and hadn't we tested his blood 2 weeks ago chances were we'd only have found out in a year or 2 so those extra few weeks will not make the difference. So now I'm gathering information, talking to people to know where there's good stuff... But what keeps on being quite ununderstandable to me (I hope this will get explained on December 6th) is how it works. So it's auto-immune, meaning gluten trigger an immune response. Is this a black and white thing? Does 1 grain of wheat trigger the same response as a full bowl of spaghetti? And I mean this on a bowel and organs level, not on a symptoms level, as I gather (is this correct?) that not having any symptoms does not mean that his bowel doesn't get attacked? I know it all could be worse, I truly do, but to be honest, this is the 4th "anvil falling on my head out of a clear blue sky" diagnosis that I got for one of my most loved people. First my mother was diagnosed with presenile dementia without anyone in the family having it. Then my unborn daughter turned out to have a chromosomal defect that made that she could only live inside of me and died when she was born, then my sister turned out to have (a tested non genetic 🤯) form of presenile dementia as well, with me being her only caretaker as my mother passed away a few years ago and she has no family of her own. And now this. And this is absolutely not only the least of this row but of course not even in the same ball park. But for my resilience and bearing capacity this just feels not little as it affects the life of my little boy... -
By Wheatwacked · Posted
Could be the Ozampic is masking your expected symptoms. Like an analgesic masks pain. Qzampic slows digestion to lower the rate glucose enters the intestine to slow its effect on glucose level. It seems it might also slow down the gluten entry into the intestine, reducing its trigger level for the antibodies. Ultimately the damage from gluten is the same, just not as fast so the pain is less. Sourdough bread has less gluten. Ozampic siows its entry. -
By Wheatwacked · Posted
You can sell it better if the whole family does gluten free. If he does have Celiac Diease, it is genetic so either you, your spouse, or both have a 40% chance of also having Celiac. There are over 200 non classic symptoms also caused by celiac disease not often considered by doctors. Joint pain, muscle pain, muscle cramps, osteoporosis, and allergies for starters. -
By Wheatwacked · Posted
Hello @MHavoc, thank you for your question and welcome to the clinic. First, has the contstipation abated with the GFD? If your are pursuing further diagnostics you must continue to eat gluten. Each lab has their own reference range for their test, but they indicate an H for high. Typically anything above 11 is considered positive. Mild chronic inflammation (gastritis) can interfere with intrinsic factor for B12 leading to low B12 causing low MCHC (anemia). So what is causing your gastritis? A high tTG IgA level generally indicates potential gastrointestinal problems most commonly associated with celiac disease. Although the biopsy is the Gold Standard for diagnosis, not finding damage in the biopsy does not rule out Celiac Disease. It means they did not find damage where they looked. The small intestine is over 20 feet long. Many here have been blood positive and biopsy negative, it just delays the diagnosis until you have enough damage to find and fit their diagnostic profile. The Ttg-iga is not only sensitive (90%) but highly specific (98%) and won’t show positive until the damage is severe. It is estimated that 40% of first degree relatives of diagnosed Celiacs have undiagnosed Celiac Disease, so your sister is a big risk factor in whether you have it. Are You Confused About Your Celiac Disease Lab Results? This article explains it better and is quite readable. Celiac Disease can cause deficient vitamin D. Low vitamin D compromises the immune system. Any other symptoms? liver enzymes? Recent cold or flue? Celiac Disease and the malabsorption it causes through vitamin and mineral deficiencies can elicit symptoms not usually associated with Celiac Disease. Case in point maybe your gastritis and anemia.
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