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What If We Have Porphyria Disease?

Electra

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Electra Enthusiast
Electra
Posted

Ok since both times I had my severe attacks I had just started on antibiotics, I'm now wondering if it was Porphyria Disease. The dr. in the ER suggested I check it out. My daughter has been eating gluten and has not broke out with a rash lately. She's not eating much these days though, so that could be why. I wish we had some sun this time of year because if I put her in the sun and she broke out then that would be a huge clue for me, but we had her in the sun all summer and never had a problem, so I just don't get it. I've cut out all my meds since my attack and have only had very slight leg numbness (which is the classic sign of an oncoming attack for me)!! If it's the meds then I'm pretty positive it's Porphyria disease. The diet for Porphyria is quite different then the gluten free one. I would have to have lots of carbs to keep my body in balance. I now eat very little carbs because I am afraid they have gluten in them. I could bring on an attack of Porphyria by eating little carbs. Man how in the world can I ever get better if I don't have a diagnosis. This is just way too complex for me, and I don't have the energy (without my meds) to deal with any of it. I have a sleep disorder (Narcolepsy) so without my meds I'm pretty much a zombie!! My test results could not come soon enough!!

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Nancym Enthusiast
Nancym
Posted

A Gluten free diet is not low carb diet unless you make it so. In fact, people who replace all the stuff they were eating before (bread, crackers, etc) are eating a higher carb diet because the stuff they make gluten-free products from are higher in carbohydrates. All that tapicoa, potato, and corn starch. Rice is higher in carbs than wheat, corn too. The first thing I noticed when I bought a loaf of gluten-free bread is how much higher carb (and calorie) it is.

Electra Enthusiast
Electra
Posted
  • Author

Well what doesn't make sense to me is that I have been on a low carb (actually no carb for me) diet before and I have felt better then I've ever felt before, so if it were Porphyria Disease then the no carb diet would surely cause me some pain, but if it were Celiac Disease then no carbs would definitely make me feel better!! That's the one thing that keeps me believeing that it's Celiac and not Porphyria?? Not knowing is the worst part of all!! I'm impatient to boot, so the waiting and anticipation is killing me UG!!

Michi8 Contributor
Michi8
Posted
Well what doesn't make sense to me is that I have been on a low carb (actually no carb for me) diet before and I have felt better then I've ever felt before, so if it were Porphyria Disease then the no carb diet would surely cause me some pain, but if it were Celiac Disease then no carbs would definitely make me feel better!! That's the one thing that keeps me believeing that it's Celiac and not Porphyria?? Not knowing is the worst part of all!! I'm impatient to boot, so the waiting and anticipation is killing me UG!!

Celiac Disease is an intolerance to gluten (the protein in wheat, barley, rye, etc), not an intolerance to carbohydrates. As Nancym mentioned, there are carbs in potatoes, rice, corn, millet, etc...and those are gluten free. Fruits, vegetables and legumes all have carbohydrates too. To be completely carbohydrate free is not a healthy way to eat.

Michelle

Electra Enthusiast
Electra
Posted
  • Author
Celiac Disease is an intolerance to gluten (the protein in wheat, barley, rye, etc), not an intolerance to carbohydrates. As Nancym mentioned, there are carbs in potatoes, rice, corn, millet, etc...and those are gluten free. Fruits, vegetables and legumes all have carbohydrates too. To be completely carbohydrate free is not a healthy way to eat.

Michelle

Well I'm aware of that, but if I were to go completely carb free (or almost completely carb free the only carbs I had were from fresh vegetables) then that would explain why I didn't have a reaction from gluten, but if it were Porphyria I have then going that low in carbs would shurely have made me very sick and not made me feel better, so it stands to reason that if the low carb diet works for me then It's more a gluten reaction then a low carb reaction.

Here is what Porphyria is........

"Porphyria is not a single disease but a group of at least eight disorders that differ considerably from each other. A common feature in all porphyrias is the accumulation in the body of "porphyrins" or "porphyrin precursors." Although these are normal body chemicals, they normally do not accumulate. Precisely which of these chemicals builds up depends upon the type of porphyria."

This is how Porphyria is treated........

"Hospitalization is often necessary for acute attacks. Medications for pain, nausea and vomiting, and close observation are generally required."

"A high intake of glucose or other carbohydrates can help suppress disease activity and can be given by vein or by mouth. Intravenous heme therapy is more potent in suppressing disease activity. It can be started after a trial of glucose therapy. However, the response to heme therapy is best if started early in an attack. Therefore, delaying heme therapy until glucose alone has not been effective may not be warranted unless an attack is mild."

mouse Enthusiast
mouse
Posted

The Porphyria test is an easy one. It is a 24 hour urine specimen that stays in the frig. between urination. My Father had two types of Porphyria and I have been tested numerous times and all came back negative. In my case it was Celiac and not Porphyria. If you have doubts, then get tested for Celiac and Porphyria. But, a diet does not control Porphyria and it is a not nice disease to have. My Father died at age 52.

Electra Enthusiast
Electra
Posted
  • Author

From what I read porphyria is also hard to diagnose. The literature I read says that you need blood, urine, and a stool test to rule it out completely. I guess it's commonly misdiagnosed as well, but there isn't a whole lot of information on it out there since it is "supposably" very rare!! I'm hoping it's neither, but If it was Celiac then all of our symptoms over the years would be explainable, and it's controlable to boot, so it would actually be a relief for me. I'm just afraid that my blood tests will come back negative and I'll be back at square one. I hear that most labs don't even do the tests correctly so even if you have the panel it may not come back as a positive when you are indeed positive. My dr. knows very little about either disease and is willing to do all the tests I need, because he is a real advocate for finding out the "right" diagnosis, but he's no expert in Celiac so they may not do the tests right at the lab UG!! I just hope I have some answers soon!!

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  • 1 month later...
momoffour Newbie
momoffour
Posted
From what I read porphyria is also hard to diagnose. The literature I read says that you need blood, urine, and a stool test to rule it out completely. I guess it's commonly misdiagnosed as well, but there isn't a whole lot of information on it out there since it is "supposably" very rare!! I'm hoping it's neither, but If it was Celiac then all of our symptoms over the years would be explainable, and it's controlable to boot, so it would actually be a relief for me. I'm just afraid that my blood tests will come back negative and I'll be back at square one. I hear that most labs don't even do the tests correctly so even if you have the panel it may not come back as a positive when you are indeed positive. My dr. knows very little about either disease and is willing to do all the tests I need, because he is a real advocate for finding out the "right" diagnosis, but he's no expert in Celiac so they may not do the tests right at the lab UG!! I just hope I have some answers soon!!

Wow, I feel like I'm reading about myself here! I'm in the process of being retested for Celiac after a lifetime of assuming I had it. I was diagnosed as a baby, and then never tested again, told it was in remission all these years though I've had a stomach ache for 45 years! Three years ago I gave up gluten and my stomach ache went away, and shortly after I was diagnosed with a benign meningioma, and ended up with severe headpain from it and the surgery. In the last three years I've suffered incredible pain in my head, and then the last 10 months or so the pain has begun to creep throughout my body. Recently I was diagnosed w/ Porphyria, and no one knows what to do with me. But interestingly enough, when I first gave up gluten I was eating very little carbs because I didn't really know what to eat -- and then again I was in pain, so no appetite. Would make sense if I had porphyria it would rear it's head at that time, seeing as I was really not eating much of anything. I have all the symptoms of one of the porphyrias (AIP?); but I also have what we thought was peripheral neuropathy, and I'm taking actiq fentanyl which has gluten in it. Just a little bit, but I'm taking a lot so it could be I'm having a celiac attack now. Very complicated and I'm sick as a dog. I went to the Celiac Center at Columbia Presbyterian, and we're in the process of getting me a correct diagnosis. I also have an appointment to see a porphyria specialist in CT but I couldn't get an appointment until mid Feb. I feel it's so far away and how will I survive until then????? But I must. All the doctors say I'm doing the right thing, testing these all out, but it's taking so long and I'm so confused. The doc at the Celiac Center said that lots of people feel better on a gluten free diet for some reason. There are lots of carbs in gluten free products, and lots of calories, and I'm gaining weight like crazy, which is a bummer! It's been a really hard three years. I know how you feel Angie, you just want a diagnosis so you can get on with it. I feel the exact same way. Thanks all, for listening.

blueeyedmanda Community Regular
blueeyedmanda
Posted

I never realized how much more carbs our foods had, my coworkers always say well your diet is healthy, rice pasta healthy....I gained weight after I found out how good Tikyanda pasta was....for a few weeks I made it frequently.

Electra Enthusiast
Electra
Posted
  • Author

I've actually been officially diagnosed with Celiac now, but I'm sooooooooooooo depressed. I'm feeling so much better since going gluten free, but I've gained about 12 pds and that's killing me!! I was already bigger then I wanted to be because I was so sick all the time that I would only eat junk food because it didn't seem to make me as sick UG!! My blood tests were positive so I'm hoping they aren't wrong because I'm confused enough lol!! This all really stinks. I'm not even eating enough to survive and I'm still gaining-I COMPLETELY HATE this!!

momoffour Newbie
momoffour
Posted

...oh yes, no lack of good tasting products, that's for sure! I love Whole Foods gluten free raisin bread with Smart Balance Spread, cinnamon and agave nectar. yummy! But I'm not walking since my legs are so pained. And my thyroid stopped working for the longest time. So I am sitting here thinking I need to go back to Salads again.

momoffour Newbie
momoffour
Posted
I've actually been officially diagnosed with Celiac now, but I'm sooooooooooooo depressed. I'm feeling so much better since going gluten free, but I've gained about 12 pds and that's killing me!! I was already bigger then I wanted to be because I was so sick all the time that I would only eat junk food because it didn't seem to make me as sick UG!! My blood tests were positive so I'm hoping they aren't wrong because I'm confused enough lol!! This all really stinks. I'm not even eating enough to survive and I'm still gaining-I COMPLETELY HATE this!!

It's so good you finally got a diagnosis, right? Better than wondering...but I do understand the confusion. As far as the food, I think it's a matter of settling into all of this and doing what's good for the body, what actually makes you feel better, and not the emotional late night eating, or boredome eating, etc. Being educated about ALL you can eat.

As for me, I was at a really great weight for the last three years, after I went gluten free, and something happened, not sure what, and I gained 30lbs, but really, I don't think it's the celiac that caused it. I do think it's a bunch of different things, and now I have to really get back to eating healthy. Porphyria, Celiac, or not. I think our bodies crave certain things. But I do think it's all do-able. It's a committment.

And remember, you FEEL better gluten free. That's what counts! Be well...

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