xxParkerxx Posted September 16 Report Share Posted September 16 I have the celiac gene. I know this from when I was tested for it back in 2021 or 2022, sometime around then. Back when I had the testing I didn't have the inflammatory markers for it to be celiac, and I didn't have any of the symptoms. My mom and sister are both gf. The past week or so I've been reacting to what I think is gluten. But I'm not completely sure, because last night I took my sleep medication (50mg Hydroxyzine, been on it for almost a year) and then reacted. So it could also be the start of MCAS, which would complete my evil triad (POTS, EDS, MCAS). So idk. Mom doesn't wanna go in just yet. So I'm gonna eat gf for the next 6-10 weeks and see what happens. Just pissed. I wanna eat whatever I want and be able to function. I'm already on enough medications but why this now? Ugh. Just frustrated. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted September 17 Report Share Posted September 17 This could just be part of the flare up you are in. Just speaking from my own experience. when I am in a flare up I can become sensitive to certain foods. I often have GI issues as part of a flare up. After the flare up settles down I can generally go back to my previous diet. This is just me but I suspect this could be the case for many. If you are finding that certain foods are making you feel worse, good to avoid them for now. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted September 17 Report Share Posted September 17 I’m not an expert on this topic, but if you are able, wouldn’t now be the ideal time to repeat the blood tests? If you can manage it, of course. Being in the middle of a flare might make it difficult. Sorry that you are having such a hard time with more problems popping up. I am in a similar situation myself at the moment, although different symptoms. Managed to stir up my bowel problems by rushing into an autoimmune medication for my OI. Feel like I can’t win. Just got to keep slogging on, making changes, and hoping for things to improve a little. Quote Link to comment Share on other sites More sharing options...
xxParkerxx Posted September 17 Author Report Share Posted September 17 1 hour ago, MomtoGiuliana said: This could just be part of the flare up you are in. Just speaking from my own experience. when I am in a flare up I can become sensitive to certain foods. I often have GI issues as part of a flare up. After the flare up settles down I can generally go back to my previous diet. This is just me but I suspect this could be the case for many. If you are finding that certain foods are making you feel worse, good to avoid them for now. It's not so much that it's making me feel worse.... It's that I'm having allergic reactions on my skin. Like basically hives all over my arms and hands. Quote Link to comment Share on other sites More sharing options...
xxParkerxx Posted September 17 Author Report Share Posted September 17 56 minutes ago, Sarah Tee said: I’m not an expert on this topic, but if you are able, wouldn’t now be the ideal time to repeat the blood tests? If you can manage it, of course. Being in the middle of a flare might make it difficult. Sorry that you are having such a hard time with more problems popping up. I am in a similar situation myself at the moment, although different symptoms. Managed to stir up my bowel problems by rushing into an autoimmune medication for my OI. Feel like I can’t win. Just got to keep slogging on, making changes, and hoping for things to improve a little. Actually maybe. Not sure if it would show up though because I'm not having any stomach symptoms? IDK. But that is a good idea. Aww that sucks - I hope you feel better soon. Quote Link to comment Share on other sites More sharing options...
Sea otter Posted September 17 Report Share Posted September 17 1 hour ago, MomtoGiuliana said: This could just be part of the flare up you are in. Just speaking from my own experience. when I am in a flare up I can become sensitive to certain foods. I often have GI issues as part of a flare up. After the flare up settles down I can generally go back to my previous diet. This is just me but I suspect this could be the case for many. If you are finding that certain foods are making you feel worse, good to avoid them for now. Glad you mentioned this. This is also my case, GI issues when in flare, after flare I can go back to previous diet. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted September 17 Report Share Posted September 17 41 minutes ago, xxParkerxx said: I'm having allergic reactions on my skin. Like basically hives all over my arms and hands. I don't think hives are something to ignore. It would be important to have that evaluated by your dr. Quote Link to comment Share on other sites More sharing options...
xxParkerxx Posted September 17 Author Report Share Posted September 17 I should add. The last 2 nights I've reacted to my sleep medication. Hydroxyzine. Which is ironically an antihistamine. I've been on this for almost a year. No issues until the last 2 nights. Same reaction as I'm having to gluten. I don't understand. Thankfully I"ve been fine with all the rest of my meds and I can always stop taking the hydroxyzine. This reaction is honestly making it harder to fall asleep than it does without the medication. I even take it with Zyrtec - since I'm taking that at the same time anyway - but it's still an issue. I'm assuming it's the hydroxyzine because I'm ok until I take that. And in order to try to make the reaction go away I've been taking more Zyrtec - that's what my old allergist recommended - and it's making it somewhat better. Quote Link to comment Share on other sites More sharing options...
xxParkerxx Posted September 17 Author Report Share Posted September 17 Just now, MomtoGiuliana said: I don't think hives are something to ignore. It would be important to have that evaluated by your dr. My mother is convinced that it's just a gluten allergy - she reacted similarly before she cut out gluten - and wants me to eat gf for the next 6-10 weeks to see if that helps. Quote Link to comment Share on other sites More sharing options...
MikeO Posted September 17 Report Share Posted September 17 2 hours ago, xxParkerxx said: It's that I'm having allergic reactions on my skin. Like basically hives all over my arms and hands. I run into this from time to time. Often thought of MCAS but not going there as it is not well received in my health care system. we did figure out that i get hives and rashes with some of the meds i was taking. i also get sudden allergy flare ups. Might pay to see a allergist and take a peak. Edit: Tracking potential triggers (stuff you did to provoke symptoms) is helpful IMO. Quote Link to comment Share on other sites More sharing options...
xxParkerxx Posted September 17 Author Report Share Posted September 17 2 hours ago, MikeO said: I run into this from time to time. Often thought of MCAS but not going there as it is not well received in my health care system. we did figure out that i get hives and rashes with some of the meds i was taking. i also get sudden allergy flare ups. Might pay to see a allergist and take a peak. Edit: Tracking potential triggers (stuff you did to provoke symptoms) is helpful IMO. It's pretty well received by my doctor and she actually asked about it when I first saw her. I've had bad reactions to meds before, but that's usually happening within the first few times i take a med, not after I've been taking it for almost a year. idk though. Yea I will probably see about seeing an allergist. The thing is I don't know what I'm doing to provoke the symptoms. Quote Link to comment Share on other sites More sharing options...
MikeO Posted September 17 Report Share Posted September 17 10 minutes ago, xxParkerxx said: The thing is I don't know what I'm doing to provoke the symptoms. Well here i back out items that gives me symptoms. example is eating tomatoes and i start cramping up, Just smelling aunt nellie's red cabbage and my asthma kicks in. sometimes we have to do a reset to find to find out what bothers us. one change at a time. can't say what you are going thru but trial and error helps. Quote Link to comment Share on other sites More sharing options...
xxParkerxx Posted September 17 Author Report Share Posted September 17 1 hour ago, MikeO said: Well here i back out items that gives me symptoms. example is eating tomatoes and i start cramping up, Just smelling aunt nellie's red cabbage and my asthma kicks in. sometimes we have to do a reset to find to find out what bothers us. one change at a time. can't say what you are going thru but trial and error helps. The thing is I don't know what's giving me symptoms. With some things, I can take rough guesses. I think I might skip my sleep meds tonight and see what happens. But otherwise I wouldn't know the cause of these reactions. I'm tempted to wash all the cloth things in my bedroom and see if that helps. Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted September 23 Report Share Posted September 23 On 9/17/2024 at 8:52 AM, Sarah Tee said: Feel like I can’t win. @Sarah Tee, Right there with you Sarah Tee! Like whack a mole here too! Unfortunately my Pancreatitis flared. Symptoms all over. Worse is BP at 188/80 and the development of painful subcutaneous nodules all over my trunk. Good grief! Hope you’re feeling better. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted September 23 Report Share Posted September 23 @MaineDoug, sorry to hear that. Pancreatitis sounds horrible. Hope you can get it under control soon. I managed to cook a little tonight, so I must be a bit better. Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted September 23 Report Share Posted September 23 @Sarah Tee, The Pancreatitis is the worst! I thought the POTS was debilitating, with the unstable scary high BP & Tachycardia. But the Pancreatitis makes me so sick I’m homebound again. It hits many organ systems and worst of all are the cognitive effects. I get “stupid”, can’t remember things, can’t think, and feel terribly anxious. Also these d*** rice like nodules! I laughed at them at first. BUT they’re becoming very painful, so bad I can’t sleep! And the literature says they can break through the skin and become weeping wounds! The mechanism is no fun to think of either, the Pancreatic ducts become inflamed, the enzymes back into the blood, seek out fat tissue, and KILL it. They become necrotic, encapsulated and painful. Just Ughhh! Hang in there, we shall overcome! 🕉️ Quote Link to comment Share on other sites More sharing options...
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