Symptoms?

[ghostcat]

Hi,

I'm new and not "officially" diagnosed.....however, I've reluctantly come to the conclusion I cannot eat wheat. I don't think it's celiac, maybe gluten intolerance? I noticed many members of the board here aren't "officially" diagnosed, but have gone gluten free with good results and was hoping I could get some feedback that might help me in managing my health. Hope this isn't too long.

I am diagnosed with Hashimoto's. However, it's mild & luckily, due to my habits of exercise and healthy eating, it's stable for years. I was a vegetarian and really feel that it's helped me stay well with my thyroid, however, I think that's when my intestinal trouble started to become more noticable mainly due to many meat substitutes being made with WHEAT GLUTEN.

Early on in my diagnosis, I was frustrated with symptoms and a doctor was quick to point out food allergies. I did do an elimination diet and noticed symptoms associated with corn. When I eat corn (or corn syrup, corn starch, etc.) I'll feel icky initially, but as within 24 hours my lymph glands swell (like I have a flu-not anaphylatic shock or anything,) and then I break out with little pimples that itch, all over my face, neck and chest, mainly along lymph nodes. I also get this reaction to sulfer dioxide found on dried fruit, diarreah too-but I do have a confirmed allergy for petrolium and I'm pretty sure that's one of the ways they make sulfer dioxide. So I can recognize an allergic reaction. Also, within an hour of drinking milk, I'll have flu like symptoms. I'm not sure of the exact mechanism of each allergic reaction, but if it happens a few times, I take a clue and move on.

It's uncomfortable, but the pimples go away quicker with Benadryl (usually takes a week or two,) and while I don't enjoy looking chinless, being achy or having trouble breathing, there are worst things in life. I avoid eating what I need to, problem solved.

My mother was quick to point out that my pediatrician as a kid told her I had food allergies, but she never had me tested as recommended (we're Hungarian, and truthfully, Hungarian food consists of A LOT of meat- so the symptoms probably came and went, but not too often and she didn't feed me any processed food.)

I hadn't noticed wheat symptoms mainly because I didn't put two and two together. I initially had problems adjusting to my thyroid medication and thought undigested food I passed was just a by-product. I've been having these flare-ups of abdominal/back pain for years, but it never occured to me it was wheat. I've been to several gynocologists because I was afraid of issues with my ovaries, but I'm fine-like clockwork, I finally argued with my last doctor this wasn't "just back pain," (I do belly dance, yoga and ride my bike regularly-I could do all those without pain-this was internal,) and she diagnosed me with diverticulitis and recommend a endoscopy? (I'm sure I've got that wrong), which makes no sense because I eat too healthy/low fat. My pain went away once again, so I just blew it off.

Finally, on a whim, I eliminated wheat and most dairy (except cheese,) from my diet.......all my pain is gone and I have a normal stool I haven't had in years. I started eating chicken, fish and eggs (almost daily) and lost weight. I also notice when I have "flare ups" I get bloated, but it's not really actual weight, I'm actually on the slim side, but I get puffy.

I fall off the wagon ever so often and if I cheat more than a day (recently two days in a row with a gallon of ice cream-hey someone had to finish it).....the horrible pain is back. It's mainly on my lower left abdomin and all around my lower back. The best way I can describe it, it feels like a have a rock in my gut and it's pressing up against everything else....I'm bloated and it hurts to eat much, and it's tender to the touch and with movement....like an open wound. I end up slouching all the time from pain. This has been coming and going for years and seems to happen when I have wheat too. Is this consistent with celiac or gluten intolerance, or is it just a coincidence? I'm just wondering if the pain on one side is something else and the gluten intolerance is only a small part? Or are the symptoms consistent with celiac? what tests should I consider?

I've had other symptoms like arthritis, numbness and tingling in my legs, occasional rashes (that's what make-up's for!) and asthma symptoms, but being hypothyroid, I figured it's just par for the course of hypothyroidism and autoimmune disease, so tend to ignore stuff and just live with it and get on with me life. But it's been recommended I see a rhuematologist before and some doctors have suggested Lupus.....I tend to only go when I feel really crappie and sadly, it seems that a lot of doctors out there seem to not even have basic knowledge regarding autoimmune diseases like hypothyroidism, it was such a nightmare getting diagnosed for such a minor auto-immune disease and so easily dealt with, if I had only known what the heck was going on......I'm really hesitant to pursue this, but when the pain flares up.......

[The Fluffy Assassin]

I am diagnosed with Hashimoto's. However, it's mild & luckily, due to my habits of exercise and healthy eating, it's stable for years. I was a vegetarian and really feel that it's helped me stay well with my thyroid, however, I think that's when my intestinal trouble started to become more noticable mainly due to many meat substitutes being made with WHEAT GLUTEN.

Early on in my diagnosis, I was frustrated with symptoms and a doctor was quick to point out food allergies. I did do an elimination diet and noticed symptoms associated with corn. When I eat corn (or corn syrup, corn starch, etc.) I'll feel icky initially, but as within 24 hours my lymph glands swell (like I have a flu-not anaphylatic shock or anything,) and then I break out with little pimples that itch, all over my face, neck and chest, mainly along lymph nodes. I also get this reaction to sulfer dioxide found on dried fruit, diarreah too-but I do have a confirmed allergy for petrolium and I'm pretty sure that's one of the ways they make sulfer dioxide. So I can recognize an allergic reaction. Also, within an hour of drinking milk, I'll have flu like symptoms. I'm not sure of the exact mechanism of each allergic reaction, but if it happens a few times, I take a clue and move on.

It's uncomfortable, but the pimples go away quicker with Benadryl (usually takes a week or two,) and while I don't enjoy looking chinless, being achy or having trouble breathing, there are worst things in life. I avoid eating what I need to, problem solved.

Celiac disease is also an autoimmune disorder, and is frequently associated with many other autoimmune disorders, including Hashimoto's, as well as food allergies. Celiac disease is considered the first cause of these, however, to the best of my knowledge. You might also want to look at pictures of dermatitis herpetiformis (eg Open Original Shared Link to see if any of this looks familiar; it's the skin form of celiac disease. (You didn't mention itching insanely, though, so I'd assume this isn't something that you have.)

In a nutshell, it seems like there's a very strong chance that you have celiac disease, at least strong enough to follow it up as thoroughly as you can. It's important, because if you are celiac, none of this stuff is going to get better unless you go totally gluten-free, and it will most certainly get worse. If you are celiac and you go gluten-free, some of the food allergies might go away in time.

Regardless, good luck to you, and welcome.

[ghostcat]

Thank you so much for responding......well I DO itch, but I take Benadryll almost daily, partially for itching and other allergy symptoms, and partially for insomnia, I'm a chronic insomniac. I've also tried Ambien and even tiny doses of Xanex....both REALLY GOOD STUFF! But I'm pretty sure Ambien eats holes in people's brains and Xanex is addictive. I had a friend who was a good 15-20 years older than me and a big pill popper (hard to say how many she actually needs,) and recently there was a problem with her kidneys, I realized that it was better to address the underlying issue causing my symptoms than only treat the symptoms. But basically....I'm usually drugged in some form....drugged to stop the itching and uncomfortable pain and just get on with life.

I've been trying to do research on my own and try things since I was diagnosed hypothyroid because again, many doctors seem like part of the idiot squad and they just want to shove drugs down my throat to mask symptoms......I've stablized eating vegetarian and exercising and limiting what toxins I'm exposed to......it's only now that I've been a little better for a few years I started to wonder WHY I was still have rashes and intestinal stuff and pain being so healthy otherwise. I had figured out almost a decade ago that I needed to take vitamin supplements to just stay healthy as a normal person, but was frustrated that why is that still the case when I eat so healthy? Why am I not absorbing ANY vitamins from the big bowl of fresh veggies I'm eating?!

As far as the Hashimoto's......I can see celiac's contributing to it, but I did have some major surgery on my jaw as a kid that effected my neck and I've heard a trauma to that area can contribute also....grandma had rheumatoid arthritis, so don't I just have the predisposition in my genetic make-up? However, having food allergies as a kid as my mother said, was probably the big red flag that heeded, might have stopped me from getting as sick as I am?

What tests do I need? I don't have insurance, but am able to pay when I go to the doctor, my issue is, I don't want a bunch of irrelevant tests because doctors are too stupid to take time, talk to me and play detective......I blew off whatever I was supposed to do with the "diverticulitis" test because I went home, read up and figured she just guessed because I had LEFT side pain and I was arguing with her that it wasn't just a strained back and she wanted me out of there......what an jerk. After the hassle with stupid doctors when I first was diagnosed with Hashimoto's (like if just one moron would have sat me down and told me it takes a while for your body to heal itself, I get it.) Seems like today's doctors are a sad and stupid bunch. I want to be informed and in control when i go in.

Celiac disease is also an autoimmune disorder, and is frequently associated with many other autoimmune disorders, including Hashimoto's, as well as food allergies. Celiac disease is considered the first cause of these, however, to the best of my knowledge. You might also want to look at pictures of dermatitis herpetiformis (eg Open Original Shared Link to see if any of this looks familiar; it's the skin form of celiac disease. (You didn't mention itching insanely, though, so I'd assume this isn't something that you have.)

In a nutshell, it seems like there's a very strong chance that you have celiac disease, at least strong enough to follow it up as thoroughly as you can. It's important, because if you are celiac, none of this stuff is going to get better unless you go totally gluten-free, and it will most certainly get worse. If you are celiac and you go gluten-free, some of the food allergies might go away in time.

Regardless, good luck to you, and welcome.

[ghostcat]

I looked at the pictures.....doesn't look like the main rash I get. The rash I get subsides with Benadryl too, but depending on how much I've eaten of what I shouldn't have, anywhere from a few days to weeks. It's just that time goes by, I forget and get sooooo hungry! some of the pictures of scaly patches I've had though, but very small and not too often? with Hashimoto's, unexplained rashes happen.....who knows?

Celiac disease is also an autoimmune disorder, and is frequently associated with many other autoimmune disorders, including Hashimoto's, as well as food allergies. Celiac disease is considered the first cause of these, however, to the best of my knowledge. You might also want to look at pictures of dermatitis herpetiformis (eg Open Original Shared Link to see if any of this looks familiar; it's the skin form of celiac disease. (You didn't mention itching insanely, though, so I'd assume this isn't something that you have.)

In a nutshell, it seems like there's a very strong chance that you have celiac disease, at least strong enough to follow it up as thoroughly as you can. It's important, because if you are celiac, none of this stuff is going to get better unless you go totally gluten-free, and it will most certainly get worse. If you are celiac and you go gluten-free, some of the food allergies might go away in time.

Regardless, good luck to you, and welcome.

[The Fluffy Assassin]

Thank you so much for responding......well I DO itch, but I take Benadryll almost daily, partially for itching and other allergy symptoms, and partially for insomnia, I'm a chronic insomniac. I've also tried Ambien and even tiny doses of Xanex....both REALLY GOOD STUFF! But I'm pretty sure Ambien eats holes in people's brains and Xanex is addictive. I had a friend who was a good 15-20 years older than me and a big pill popper (hard to say how many she actually needs,) and recently there was a problem with her kidneys, I realized that it was better to address the underlying issue causing my symptoms than only treat the symptoms. But basically....I'm usually drugged in some form....drugged to stop the itching and uncomfortable pain and just get on with life.

I've been trying to do research on my own and try things since I was diagnosed hypothyroid because again, many doctors seem like part of the idiot squad and they just want to shove drugs down my throat to mask symptoms......I've stablized eating vegetarian and exercising and limiting what toxins I'm exposed to......it's only now that I've been a little better for a few years I started to wonder WHY I was still have rashes and intestinal stuff and pain being so healthy otherwise. I had figured out almost a decade ago that I needed to take vitamin supplements to just stay healthy as a normal person, but was frustrated that why is that still the case when I eat so healthy? Why am I not absorbing ANY vitamins from the big bowl of fresh veggies I'm eating?!

As far as the Hashimoto's......I can see celiac's contributing to it, but I did have some major surgery on my jaw as a kid that effected my neck and I've heard a trauma to that area can contribute also....grandma had rheumatoid arthritis, so don't I just have the predisposition in my genetic make-up? However, having food allergies as a kid as my mother said, was probably the big red flag that heeded, might have stopped me from getting as sick as I am?

What tests do I need? I don't have insurance, but am able to pay when I go to the doctor, my issue is, I don't want a bunch of irrelevant tests because doctors are too stupid to take time, talk to me and play detective......I blew off whatever I was supposed to do with the "diverticulitis" test because I went home, read up and figured she just guessed because I had LEFT side pain and I was arguing with her that it wasn't just a strained back and she wanted me out of there......what an jerk. After the hassle with stupid doctors when I first was diagnosed with Hashimoto's (like if just one moron would have sat me down and told me it takes a while for your body to heal itself, I get it.) Seems like today's doctors are a sad and stupid bunch. I want to be informed and in control when i go in.

Testing for celiac disease requires you to keep eating gluten and includes a blood test and then a biopsy of the small intestine. Given your attitude toward doctors and medicine, you'd probably do better just to go gluten free and see if you notice an improvement in the coming weeks/months.