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Showing results for 'Porphyria'.
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This is something which I have been trying to understand since 2012 and even the Porphyria Association of America (UK I haven't gotten a repose from as yet) has 0 information or recommendations so I'm virtually on my own trying to figure things out and walk the knife edge with being a T1D on top of it all (plus other medical). What I am looking for is others who have Porphyria (specifically AIP, but any other's are welcome also), how does having Celiac effect your Porphyria treatment(s) or vice versa for that matter. I know there is a LONG list of drugs/medications that with Porphyria we can't have or should avoid yet some of those medications are not celiac safe (depending on the country you are in) and there is no alternative to that medication that would be safe to take. Does anyone find when they have a Porphyria attack that they also end up with a flair that mimics a gluten response or even vice versa (feels like a glutening but ends up being a Porphyria attack or even leads to an attack.
This topic is really rare. In fact, I did a quick search within the forum and found some old posts, but there were only 4 and one was yours! https://www.celiac.com/search/?&q=Porphyria &search_and_or=and I think you are trying to distinguish a gluten exposure (attack or flare up in celiac disease) vs. porphyria. It sounds like symptoms can overlap. You can have your GI run follow-up celiac disease antibodies testing. If elevated, you know that your celiac disease is still active. There might be some OTC tests that could be available in your area. Like: https://glutendetective.com Gluten in medications is pretty rare. The biggest problem is that you have to play “detective” (along with your healthcare providers), to insure if the medication is actually gluten free. Pharmaceuticals should be transparent. We should not have to jump through hoops. The reality is that most medications are gluten free. Finally, I firmly believe that by triggering your celiac disease (activating it with gluten exposures), that it can activate other health issues. For example, a gluten exposure not only triggers my celiac disease, but also affects my thyroid (Hashimoto’s) and stomach (Chronic Autoimmune Gastritis. All three can flare. Yikes! Just as controlling blood sugar is hard for a T1D when your celiac disease is active.
I have had severe pain in my right side under my rib for two months now and last week I had to go to the ER because it felt like an organ was about to explode! The pain was excruciating and got hot in my side and was getting pain also shooting up in my upper right chest and my low right back up to my shoulder blade and also my left hip!! I had a migraine for a week when i went to ER.. The ER doctors found nothing at all they said my blood work was fine count was fine nothing viral or bacterial and no infection. They thought it was a kidney stone or a UTI or kidney infection and was none of that and they said all my internal organs look perfect. The ER doctor said could be something called porphyria, gluten allergy, something wrong with my GI, neurological and a list of other stuff but that's the main ones that he said I need to look into. I do have nerve damage in my arm and low back with my L3-5 herniated, the nurse when I was checking out said it could be my nerve damage getting worse and causing pain but still could be anything. IDK what's wrong with me!! Driving me nuts cause I have to see a specialist and I can't afford one and don't have insurance.. I have had so much go on in my life right now that I have to go to pantries for food so changing my diet is hard but seems like the days I didn't eat it i felt better.. But my whole life I have had migraines that make me puke and can't stand light or sound and don't know why. Thought maybe because my mom is the same way..But also for the last 10-15 years I can't gain much weight at all I'm always between 104-108 always constipated since I was a kid ( rabbit turds mostly lol sorry) was diagnosed when I was a child bipolar and manic depressive and I have been with my husband almost 15 years and still have not been able to get pregnant.. I was reading on symptoms and celiac disease or gluten sensitive/allergic (my friend told my gluten sensitivity is a myth it's either celiac or not at all idk) is all those for a lot of people but my symptoms could be anything!! .. Please any advice would be great thank you!
the dr. I saw claimed he had never seen this kind of pain in the upper part of the stomach from Celiac. He suggested I also check out Porphyria!! I checked it out on the net extensively, but most of my symptoms don't quite fit with that. The "obvious" ones do, but none of the others. Plus my daughters rash is not brought on by sun it's brought on by food she eats that contain Gluten. I have never felt that kind of pain in my entire life. I literally thought my insides had blown up inside me and that they were going to start spewing out at any moment. It was like I was being stabbed continuously OUCH!!I am shocked they didn't even do an ultrasound. They did some X-Rays, and told me all tests came back normal so since I was on prednisone they said the prednisone burned a hole in the lining of my stomach and gave me an ulcer!! Since the pain I feel is constant (but not usually with the stabbing pain) and I've never had a problem with Prednizone before I'm not buying it. I don't even have an acide reflux problem. I think I had a severe glutan reaction and I refuse to eat anything but fresh fruits and veggies until the morning of my Monday Test!! I'm hoping it will show up on short notice like that. I'm going to a New England Patriots game this Sunday and I can't risk an attack!! My nerve damadge test had to be rescheduled UG!!
I was born with both lungs collapsed and had pneumonia several times in childhood, then advanced to a lifetime of bouts of bronchitis. Because I was a skinny child, my parents decided that pure cream would put weight on me, little knowing that fat cells are formed in the first two years of life. Boy, do I have the fat cells LOL. The blister rash on my hands started as a child which I inherited from my Dad. Sometimes the blisters and itch would last just a week and then leave. I was always sick with something or another. My Dad moved a lot for Boeing and worked on missles. So, I attended 17 schools, including a short time at College. During High School, my Dad was diagnosed with Porphyria and became a test subject at the University of Washington. There is no doubt that I got this disease from him. He died at age 52, undiagnosed with celiac disease. He had the projectile vomiting and sitting on the toilet at the same time. In High School I got the reputation of being a hypocondriac which I carried with me all through life. That stigma made me handle the pain longer then most people would have. I used to get sick in my senior year and would go home and then within several hours the pain would leave. We moved near to Cape Canaveral when I was 19 and the pain started one day at a new job I had just gotten. I just kept telling myself it was all in my head. When I got home I would not let my parents call a doctor as I had no insurance. Two days later, my Dad called a doctor, who ACTUALLY came to the house. Sure was different then. LOL They operated the next day and took out my right ovary, appendix and two oranges and one grapefruit - all were precancerous. There were many hospital stays and some surgery's over the next many years.25+ years ago I was dianosed with Fibrositis, now called Fibromyalgia. By, the way, a gluten-free diet took most of the pain away and that has been a nice side affect of this diet. I also have Osteoarthritis and had two artifical joints put in my large toes - also many years ago. I was diagnosed with hypo thyroid and IBS. Had surgeries for detached retina (bad fall down some stairs), torn rotater cuff (raquet ball), same fall detached my Uturus and that had to be reattached. Had a rare pneumonia five years ago that required lung surgery and a minor heart problem showed up during the same time. Of course diagnosed with Reflux and severe heart burn. Took SO many pills a day for those two alone. A few other minor surgeries along the way. At my age, I can't remember yesterday, let alone that many years. Also have asthma and it sometimes becomes severe with my food allergies and food intolerance. Use a nebulizer several times a day.Many years ago, I started getting what I would call "mini flu's". They could last several hours or just a day. I would throw up until the dry heaves would start. Nauseated and many times D time in the bathroom. Also had to live with the C bathroom problem. The throwing up was the worst and the most frequent. I had so many barium tests and all they did was reinforce the hypochondriac diagnosis (quietly, of course). Had MRI's and CAT scans during those years. Of course they threw the label at me of IBS. We used to go out to dinner locally at that time and of course in a small town you know the owner, etc. of the restaurent your eating at. Of, course I would be stupid and order rich food and then proceed to go upstairs to the bathroom and lose it all. Come back to the table, where my husband would have my coffee waiting. Bob (the owner) would always ask what it was about his cooking that made me do that. LOL.I also had a horrible temper during all those years. Since I have been gluten-free, my temper is almost gone. The only time I lose it is when a problem arises when I am very tired. It is very short duration and just very bad rudeness.Over two years ago, I started to drop weight. This for someone who spent her adult life going from a size 14 to an 18 and really working at it to even stay in that range. Used a treadmill 5 days a week and had an 8' long weight system. Part of the basement was set up for a gym for me (this was before retirement to Arizona).So, when the weight starting to come off by leaps and bounds - anything over 5 pounds a month without hard work - was leaps and bounds, I decided a doctor was in order. Here comes the frustration.(To be continued) I am really tired.
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