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Just Feeling The Need To Vent...and A Couple Questions!

tmf315

By tmf315
in Coping with Celiac Disease

Recommended Posts

tmf315 Newbie
tmf315
Posted

Hi all! I am new here. I have gluten sensitivity with autoimmune reaction,(my therapist asked "Isn't that the same thing as Celiac?" I don't know, is it?)diagnosed through no help from my local doctors who basically told me my years of allover body pain, vomiting, bathroom issues, etc. were all in my head. I had two negative blood tests, negative biopsy and just about every other test known to man, blood tests, cat scans, etc. to the tune of THOUSANDS of dollars. Last month I got tested through Enterolab (numbers were 148 for dietary sensitivity and 48 for autoimmune reaction.

ANYhow, despite being ultra careful, prepping all my own food, not wearing make-up (except for a dorky moment last week when I thought..Hairspray, how bad can it be, I won't be eating my hair..and ended up with a rash on my face & neck where it oversprayed, didn't think to look at the ingrediants) I am in so much pain today and have been since yesterday. How long on gluten free before you didn't have symptoms. I thought I was getting better (no GI issues now, just the horrible muscle & joint pain).

Also, does anyone else here need to eat all the time? I literally am eating at least every two hours! I am starved. I get really weak and shaky if I don't eat and I feel like I can't eat enought to get full. What the heck is up with that?

Thanks! Tonya

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annemarie246 Newbie
annemarie246
Posted

Have you been diagnosed with a specific auto-immune disease? I have Hashimoto's Thyroiditis and Polymyositis. The Polymyositis can cause severe muscle pain and weakness. Have the Dr.s ever checked your CPK levels? Are you on any Statins (Lipitor, Crestor)? They can cause rhabdomyolysis, the severe muscle pain/weakness they talk about in the commercials.

When I was first diagnosed with Polymyositis my CPK levels were around 20,000, they're supposed to be around 50. The pain was so bad I ended up in the emergency room on pain meds.

Luckily I've got it under control now and off the Prednisone and going gluten-free has helped. These are just some ideas, hope you feel better soon.

Bev111 Newbie
Bev111
Posted

I used to feel shakey and discovered I wasn't eating enough protein. You should make an appointment with a Dietician, preferably one that is an expert in Celiac.

It has taken me 6 months to deal with the diet and it took that long for my gut to heal.

I don't know how long it has been for you but when you have the biopsy and it is positive for Celiac than that is the time to deal with Celiac. There are many meeting to go to. This would really help. Contact your Celiac Association in your area.

rnbwdiva Newbie
rnbwdiva
Posted

Also, does anyone else here need to eat all the time? I literally am eating at least every two hours! I am starved. I get really weak and shaky if I don't eat and I feel like I can't eat enought to get full. What the heck is up with that?

Thanks! Tonya

YES!!! I have been eating non-stop. It is starting to get better, but only after many, many months off of gluten and a huge increase in probiotics and other supplements. My great new filler while I am busy preparing my next meal is to pop some left over quinoa in the oven with whole almonds on top. Lots of proteins and good fat to hold you over for the next round. ;)

Good luck!

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

Hi all! I am new here. I have gluten sensitivity with autoimmune reaction,(my therapist asked "Isn't that the same thing as Celiac?" I don't know, is it?)diagnosed through no help from my local doctors who basically told me my years of allover body pain, vomiting, bathroom issues, etc. were all in my head. I had two negative blood tests, negative biopsy and just about every other test known to man, blood tests, cat scans, etc. to the tune of THOUSANDS of dollars. Last month I got tested through Enterolab (numbers were 148 for dietary sensitivity and 48 for autoimmune reaction.

ANYhow, despite being ultra careful, prepping all my own food, not wearing make-up (except for a dorky moment last week when I thought..Hairspray, how bad can it be, I won't be eating my hair..and ended up with a rash on my face & neck where it oversprayed, didn't think to look at the ingrediants) I am in so much pain today and have been since yesterday. How long on gluten free before you didn't have symptoms. I thought I was getting better (no GI issues now, just the horrible muscle & joint pain).

Also, does anyone else here need to eat all the time? I literally am eating at least every two hours! I am starved. I get really weak and shaky if I don't eat and I feel like I can't eat enought to get full. What the heck is up with that?

Thanks! Tonya

Yes, I have the problem of getting "the shakes" when I don't eat for too many hours. I have gone to eating something small every few hours and I have smaller meals, sometimes I will only eat one actual "meal" per day and the rest of the time I just snack. I find that when I avoid foods with sugar (carbs) and eat mostly proteins and veggies I get fuller faster and can go a little longer without feeling hungry. For snacks I eat hard boiled eggs, carrots sticks with hummus, celery with peanut butter, plain yogurt with berries and little honey mixed in, I eat apples and banana sometimes too, but I try to avoid a lot of sweet fruit. Also in regards to the joint pain, have you tried eliminating soy?

tmf315 Newbie
tmf315
Posted
  • Author

Yes, I have the problem of getting "the shakes" when I don't eat for too many hours. I have gone to eating something small every few hours and I have smaller meals, sometimes I will only eat one actual "meal" per day and the rest of the time I just snack. I find that when I avoid foods with sugar (carbs) and eat mostly proteins and veggies I get fuller faster and can go a little longer without feeling hungry. For snacks I eat hard boiled eggs, carrots sticks with hummus, celery with peanut butter, plain yogurt with berries and little honey mixed in, I eat apples and banana sometimes too, but I try to avoid a lot of sweet fruit. Also in regards to the joint pain, have you tried eliminating soy?

I am so glad I am not just nutty! I also have started eating every couple of hours. I eat pretty much the same stuff you mentioned with the exception of yogurt because I am avoiding dairy at the moment. I will try dumping the soy and see what happens.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

I am so glad I am not just nutty! I also have started eating every couple of hours. I eat pretty much the same stuff you mentioned with the exception of yogurt because I am avoiding dairy at the moment. I will try dumping the soy and see what happens.

I avoid dairy as well, but yogurt is one of the few dairy products that does not bother me. However, before I figured that out I was eating coconut milk yogurt. I don't know if we are allowed to give company names on here but there is a certain brand that makes coconut milk yogurt and ice cream. It's almost better tasting than the regular stuff, IMO. The only reason I don't buy it anymore is that it is much more expensive. If someone will tell me if it's okay to share links here I can give you the link to the company website to find out if any stores carry it in your area. Or you can probably find it by doing a search for "coconut milk yogurt".

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Leper Messiah Apprentice
Leper Messiah
Posted

Yes, I have the problem of getting "the shakes" when I don't eat for too many hours.

Probably because your adrenals are tired and just can't keep up with your increased cortisol needs due to the chronic inflammation caused by gluten on top of lifes daily stressors.

Only way to take strain off is to try and stay off the gluten for a prolonged period to allow them to heal. Adrenal glandulars might help too.

conniebky Collaborator
conniebky
Posted

Yes, I eat absolutely non-stop. Most of it is raw veggies. The fruit ain't good yet. I eat a lot of peanut butter too, like on the celery or even just with a spoon.

I'm 9 days gluten free and yes, I eat like a fool, but I think it's because I'm so dag scared to eat anything so I what I eat isn't filling me up. I'm making a burger on a plate tonight. Last night I had a chicken breast.

In Kentucky where I am, there's a superstition about absolutely everything. One of them is that you shouldn't take vitamins because they make you hungry. But I'm taking my vitamins anyway, it's not like I can eat a bunch of junk food to keep full, so I've just been going day to day, but yeah, I'm hungry all the time.

ChristieKate Rookie
ChristieKate
Posted

The first couple of weeks I was gluten-free I was either starving or stuffed. Didn't matter how much or how little I ate - I was never comfortable. Now, one month in, I'm feeling much more "normal". I can eat a meal, feel satisfied and not feel hungry again for a couple of hours.

T.H. Community Regular
T.H.
Posted

I definitely had the starving thing - about a month, for me, at least. That's pretty normal if your gut is healing, and it takes weeks for it to heal up.

Re: the aches and pains? I would just cut your diet to the bone and do a food journal, honestly (record what you eat, how you feel, and then reintroduce the foods slowly, one every few days, to see if you react within 24 hours). I had nausea, dizziness, muscle pain, joint pain, etc... when I dropped my gluten. I have since found out that I have VERY mild allergies to sugar cane, eggs, dairy, soy, potatoes....the list goes on. The allergies became less mild, unfortunately, but when I cut most of my food out, and later on slowly re-introduced things back in? I realized that all these mild allergies (which cause no rash or itching) have been causing all my pain. A few other foods that I assume I'm intolerant or sensitive to are doing the same. Corn make my joints ache. Sugar cane make my muscles hurt. Citrus and peanuts give me headaches and neck pain.

I had so many foods that were giving me pain that even when I just cut a few, there was no way to tell what did what - I was in pain all the time. We've ended up doing the same diet for the kids, and both of them have discovered that some of their chronic problems have disappeared if we take away certain foods. And for all of us, the problems come back as soon as we try to introduce the food again.

Also, re: corn? If you want to check this one, you may want to do some research to find the sources. It's in everything, from table salt to baking powder to paper plates (in between them). Hard to drop that one, I can tell you from experience!

Good luck - I hope your problems are as simple to fix as my own. It hasn't been easy, but at least it's just dropping a few foods and feeling wonderful as a result.:-)

Hi all! I am new here. I have gluten sensitivity with autoimmune reaction,(my therapist asked "Isn't that the same thing as Celiac?" I don't know, is it?)diagnosed through no help from my local doctors who basically told me my years of allover body pain, vomiting, bathroom issues, etc. were all in my head. I had two negative blood tests, negative biopsy and just about every other test known to man, blood tests, cat scans, etc. to the tune of THOUSANDS of dollars. Last month I got tested through Enterolab (numbers were 148 for dietary sensitivity and 48 for autoimmune reaction.

ANYhow, despite being ultra careful, prepping all my own food, not wearing make-up (except for a dorky moment last week when I thought..Hairspray, how bad can it be, I won't be eating my hair..and ended up with a rash on my face & neck where it oversprayed, didn't think to look at the ingrediants) I am in so much pain today and have been since yesterday. How long on gluten free before you didn't have symptoms. I thought I was getting better (no GI issues now, just the horrible muscle & joint pain).

Also, does anyone else here need to eat all the time? I literally am eating at least every two hours! I am starved. I get really weak and shaky if I don't eat and I feel like I can't eat enought to get full. What the heck is up with that?

Thanks! Tonya

Looking for answers Contributor
Looking for answers
Posted

I used to feel shakey and discovered I wasn't eating enough protein. You should make an appointment with a Dietician, preferably one that is an expert in Celiac.

It has taken me 6 months to deal with the diet and it took that long for my gut to heal.

I don't know how long it has been for you but when you have the biopsy and it is positive for Celiac than that is the time to deal with Celiac. There are many meeting to go to. This would really help. Contact your Celiac Association in your area.

I agree protein and a good fats every meal made all the difference with me as well.

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