New Celiac, Healing But Still Having Symptoms.

[alwaysafter8]

Hi, I am new to this gluten-free world. I wasn't sure if this post should go here or in the intolerance forum, so forgive me if I chose wrong!

Anyway, I was diagnosed with bipolar last August & while I was researching natural ways to treat it, I came across research that showed gluten triggers mood swings. I cut gluten then (all main sources, not worrying about cross-contamination), went through a brutal withdrawal & then felt better. My foggy head lifted more than it has in years! That was enough to tell me I needed to be gluten-free.

Eventually it seemed like my progress plateaued, & yet I still had many symptoms (foggy head, difficulty getting out of bed, pregnancy-esque bloating, cramps, DH, the perpetual runny nose.. etc). I would cheat on my diet on occasion, & I'd get instant cramps & massive bloating, then spend the next 4-5 days in a really bad, low, depressed mood. So I didn't cheat very often, maybe once a month.

I finally got my doctor to order a blood test for celiac this April, even though she said since I wasn't eating gluten regularly it might be a false negative. I wasn't willing to challenge gluten but I got the test anyway & I have celiac disease! My TTG was 60. Since then, I've cut out all the trace gluten from my diet (including the 'made in a facility' items), got a new toaster, new teflon pans, threw out all old wooden spoons, etc. I think I've gotten the hang of it, for the most part.

My issue now is I still have symptoms, most namely bloating & DH that flares up every now & then. The bloating is the main issue, only because it's the only symptom I can actually see (since I'm 'bipolar', it's hard to know if the joint aches, low mood, anxiety, etc are all 'in my head' or symptoms). But still, almost everything I eat makes me bloated. Fruit, vegetables, meat, grains.. I can even have a glass of water & get bloated! I am taking probiotics, l-glutamine, fish oil, slippery elm powder... not seeing much improvement with them yet.

Now I'm not sure if my symptoms are just part of the healing process, or if I'm having intolerances to other types of food. I already know I can't tolerate dairy (casein, not lactose) or coffee & I seem to have issues with corn, potato, soy, rice. I had an allergy test for soy & corn, but neither was positive. I've been eating these grains because I thought they were safe, but then I started reading about cross-reactive foods! Now I'm paranoid that I am prolonging my healing OR doing more damage by eating them because I'm getting bloated. I cut all grains about a week ago to attempt an elimination diet, but as I am severely underweight as it is, cutting starches/grains is a little distressing.

I guess what I'm wondering, is how long did you have symptoms for once going gluten free? Is it common to bloat up like crazy after almost everything you eat when you're still healing, or does this mean I might be intolerant to other things, too? Do sensitivity tests even help? Would cross-reactive foods show up as intolerances if they're irritating my intestine? My doctor is useless when it comes to this sort of stuff & I'm basically just looking for someone to tell me I'm not crazy. Or that I am. Either way, tell me something, please! I feel so lost

[1desperateladysaved]

Hi, I am new to this gluten-free world. I wasn't sure if this post should go here or in the intolerance forum, so forgive me if I chose wrong!

Anyway, I was diagnosed with bipolar last August & while I was researching natural ways to treat it, I came across research that showed gluten triggers mood swings. I cut gluten then (all main sources, not worrying about cross-contamination), went through a brutal withdrawal & then felt better. My foggy head lifted more than it has in years! That was enough to tell me I needed to be gluten-free.

Eventually it seemed like my progress plateaued, & yet I still had many symptoms (foggy head, difficulty getting out of bed, pregnancy-esque bloating, cramps, DH, the perpetual runny nose.. etc). I would cheat on my diet on occasion, & I'd get instant cramps & massive bloating, then spend the next 4-5 days in a really bad, low, depressed mood. So I didn't cheat very often, maybe once a month.

I finally got my doctor to order a blood test for celiac this April, even though she said since I wasn't eating gluten regularly it might be a false negative. I wasn't willing to challenge gluten but I got the test anyway & I have celiac disease! My TTG was 60. Since then, I've cut out all the trace gluten from my diet (including the 'made in a facility' items), got a new toaster, new teflon pans, threw out all old wooden spoons, etc. I think I've gotten the hang of it, for the most part.

My issue now is I still have symptoms, most namely bloating & DH that flares up every now & then. The bloating is the main issue, only because it's the only symptom I can actually see (since I'm 'bipolar', it's hard to know if the joint aches, low mood, anxiety, etc are all 'in my head' or symptoms). But still, almost everything I eat makes me bloated. Fruit, vegetables, meat, grains.. I can even have a glass of water & get bloated! I am taking probiotics, l-glutamine, fish oil, slippery elm powder... not seeing much improvement with them yet.

Now I'm not sure if my symptoms are just part of the healing process, or if I'm having intolerances to other types of food. I already know I can't tolerate dairy (casein, not lactose) or coffee & I seem to have issues with corn, potato, soy, rice. I had an allergy test for soy & corn, but neither was positive. I've been eating these grains because I thought they were safe, but then I started reading about cross-reactive foods! Now I'm paranoid that I am prolonging my healing OR doing more damage by eating them because I'm getting bloated. I cut all grains about a week ago to attempt an elimination diet, but as I am severely underweight as it is, cutting starches/grains is a little distressing.

I guess what I'm wondering, is how long did you have symptoms for once going gluten free? Is it common to bloat up like crazy after almost everything you eat when you're still healing, or does this mean I might be intolerant to other things, too? Do sensitivity tests even help? Would cross-reactive foods show up as intolerances if they're irritating my intestine? My doctor is useless when it comes to this sort of stuff & I'm basically just looking for someone to tell me I'm not crazy. Or that I am. Either way, tell me something, please! I feel so lost

I just wanted to give you a quick answer, so you have one. I have been gluten free about 2 months and could have written much of this post myself. Please get well and keep reading. I will watch this too.

[rosetapper23]

I don't know about the bloating part, but it took a full 18 months before I began to feel somewhat "normal." For me, the bloating was the first symptom to disappear, since bloating tends to indicate that you've eaten something that you can't digest or tolerate well. Yes, you may have additional sensitivities, but only time will tell what they are. I suppose you've been keeping a diet diary (?). If not, it's a good place to start.

As for your DH coming and going, you MUST stop your intake of iodine for a while in order to get it to simmer down. It takes gluten and iodine for the DH to erupt (for others, it takes salicylates). Avoid seafood, iodized salt (which includes crackers, fries, and chips), and asparagus for starters. You will have to add iodine back into your diet eventually because it's a necessary nutrient; however, it fuels the DH without your ingesting gluten until your immune system quietens down. Also, there's the possibility that you're sensitive to salicylates.

Could you be getting contamination from handling pet food? Most pet foods contain wheat or barley. If you have a cat, that means it's in their saliva and on their fur, so you should be careful to wash your hands immediately after touching your cat (and probably a good idea not to kiss your cat). Have you changed to gluten-free shampoos and creme rinses? If not, that can help with both the DH and contamination. Do you kiss a significant other frequently who is a gluten eater? Again, this needs to be avoided...or the loved one has to wash his/her mouth before kissing you.

Just some suggestions--hope you heal soon!

[GFinDC]

Hi,

Your progress sounds pretty normal to me. It isn't a quick fix diet for us, there is damage to heal in our gut and that takes time to heal. Plus the changes in diet take a while for our bodies to adjust to. It seems to me that we do react to many foods at first not so much because they are a particular problem for us but because our GI systems are out of whack and "touchy". There are some food that are often problems though, especially for people new to the gluten-free diet. The ones that come to mind quickly are dairy and soy. Nightshades are also in there but not as frequently.

I had joint pains that didn't go away until I got rid of soy and nightshades and also added a thyroid supplement. Mood can definitely be affected IMHO by what we eat and how our bodies react to food. It is good when starting out on the gluten-free diet to stick with mostly whole foods that you cook from scratch at home. Avoid the processed gluten-free baked goods and frozen meals etc. Leave those for later when things are going better and you understand the diet and how your body reacts more.

The cheating once a month was keeping your body's immune system in hyperdrive mode trying to kill your intestines. The immune system starts up quickly but doesn't stop on a dime. So you probably were never without active antibodies during that time. You are moving in the right direction now though and you can find a lot of help and support there. We've all done this too and know how it can be.

Some starting the gluten-free diet tips:

Get tested before starting the gluten-free diet.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

Some threads with good info:

FAQ Celiac com

http://www.celiac.co...celiac-disease/

Celiac Newbie Info 101

http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?

http://www.celiac.co...180#entry726053

What Did You Have For Lunch Today?

http://www.celiac.co...or-lunch-today/

What Are You Cooking Tonight?

http://www.celiac.co...ooking-tonight/

Easy yummy bread in minutes

http://www.celiac.co...ead-in-minutes/

[Finally-45]

Definitely no quick fix! My doctor said to look at as if you were a burn patient. Severe burns take over a year to heal, plus surgery. Now pretend your gut was in a fire.

I hope that gave you a little chuckle. Try and have a good day.

[alwaysafter8]

I don't know about the bloating part, but it took a full 18 months before I began to feel somewhat "normal." For me, the bloating was the first symptom to disappear, since bloating tends to indicate that you've eaten something that you can't digest or tolerate well. Yes, you may have additional sensitivities, but only time will tell what they are. I suppose you've been keeping a diet diary (?). If not, it's a good place to start.

As for your DH coming and going, you MUST stop your intake of iodine for a while in order to get it to simmer down. It takes gluten and iodine for the DH to erupt (for others, it takes salicylates). Avoid seafood, iodized salt (which includes crackers, fries, and chips), and asparagus for starters. You will have to add iodine back into your diet eventually because it's a necessary nutrient; however, it fuels the DH without your ingesting gluten until your immune system quietens down. Also, there's the possibility that you're sensitive to salicylates.

Could you be getting contamination from handling pet food? Most pet foods contain wheat or barley. If you have a cat, that means it's in their saliva and on their fur, so you should be careful to wash your hands immediately after touching your cat (and probably a good idea not to kiss your cat). Have you changed to gluten-free shampoos and creme rinses? If not, that can help with both the DH and contamination. Do you kiss a significant other frequently who is a gluten eater? Again, this needs to be avoided...or the loved one has to wash his/her mouth before kissing you.

Just some suggestions--hope you heal soon!

Interesting; I hadn't heard about the iodine connection! I do eat a lot of seafood for the Omega 3s & because it's my favorite kind of meat. Guess I'll cut that down & see if it helps my DH. Thanks!

As for my cats, well, they've been grain free even before me! My one cat doesn't tolerate grains at all.. I guess that should have been a hint that her mom wouldn't, either

[alwaysafter8]

Definitely no quick fix! My doctor said to look at as if you were a burn patient. Severe burns take over a year to heal, plus surgery. Now pretend your gut was in a fire.

I hope that gave you a little chuckle. Try and have a good day.

Good visual.... it does feel like my gut is on fire sometimes!

Thanks for all the support, I guess my gut took decades to get to this point so I shouldn't expect it to heal within a month or two. I knew this, but sometimes it's hard to know if I'm getting better or not, with symptoms flaring randomly (or so it feels like it!)

I've started a food journal again to try map this out & am on my third day of no-grains... so far my bloating seems to be reducing a bit. I'm craving baked goods all over again though! Going to try cutting them all for 3 months on an elimination diet & eat low FODMAP foods for now as I seem to have difficulty with foods that all fall under that category.

I'll definitely stick around & see what else I can learn here. The recipe forum, too