Recovery Tips Please?!

[GFH33]

Hello everyone,

This is my first time posting on here, but I've come to this website countless times for advice and support. Thank you for your help then and now. I'm posting today because I'm desperate for your help.

Next week I will hit my 6 month mark for being gluten-free after being diagnosed with celiac disease in April of 2011. I've been completely gluten-free and have noticed some improvements, but still suffering on a daily basis. Is this normal?

Every morning I wake up with an upset stomach followed by several bowel movements. I'm still tired and lack the energy I used to have before getting sick. Throughout the day I deal with a bloated feeling accompanied by loud, gurgling and popping stomach noises that can be heard by everyone around me. This is extremely embarrassing and has caused social anxiety for me because I get scared to be in quiet places with other people. The stomach noises are almost constant and happen daily whether or not I eat. Once I eat it seems to get worse, but it happens when I don't eat as well. What can I do to reduce the stomach noises and need for the bathroom?

My doctor told me I would probably take 6 months to a year to fully recover. Considering my health right now I'm guessing I'll take longer than 6 months, but I'm wondering if I'm doing something wrong or if this is normal for a celiac to recover. I would be grateful for others to share tips (i.e.; things to do/not to do to improve my health), personal experiences, timelines, etc.

Thank you!

[pricklypear1971]

Digestive enzymes -I like Enzymedica, and probiotics with every meal.

And be vigilant to prevent cross contamination. You also may need to limit some other foods like dairy or eggs for a while. Your body may not be able to handle them right now.

[Newbee]

Sorry to hear you are not feeling better yet. I understand how you feel. I also can not tell much difference although I'm only less than 3 months on the gluten-free diet. Some people feel better right away and others take a long time. Do you suspect you've had celiac for years. They say you are slower to heal if you've had it for a long time. I've heard it can take years although my doctor like your said 6 months to a year and he said he thought it would be 6 months. I'm starting to wonder if I'll ever notice much difference. And this week I had strange stomach pain (which isn't usually 1 of my symptoms). I wonder if maybe it wasn't something wrong with something I ate instead of related to celiac.

[GFH33]

Digestive enzymes -I like Enzymedica, and probiotics with every meal.

And be vigilant to prevent cross contamination. You also may need to limit some other foods like dairy or eggs for a while. Your body may not be able to handle them right now.

Thanks for the suggestions! Where can you purchase Enzymedica? Also, I eliminated eggs and very rarely have dairy so I'm not sure what is causing my discomfort.

[GFH33]

Sorry to hear you are not feeling better yet. I understand how you feel. I also can not tell much difference although I'm only less than 3 months on the gluten-free diet. Some people feel better right away and others take a long time. Do you suspect you've had celiac for years. They say you are slower to heal if you've had it for a long time. I've heard it can take years although my doctor like your said 6 months to a year and he said he thought it would be 6 months. I'm starting to wonder if I'll ever notice much difference. And this week I had strange stomach pain (which isn't usually 1 of my symptoms). I wonder if maybe it wasn't something wrong with something I ate instead of related to celiac.

Thanks for your reply. It is nice to know I'm not alone in this situation. I'm not sure how long I've had celiac disease, but my symptoms started last year and it took several months before I was diagnosed. I went through 4 doctors before someone would take my symptoms seriously instead of dismissing it as IBS or stress. Once I found out I immediately went on a gluten-free diet. What are the ways one can get cross contamination? I live alone so everything in my kitchen is gluten-free. I'm wondering if it is CC or just part of the healing process. Have you had it for years? Have you improved much since you've been gluten-free?

[Marilyn R]

Hi Gfh,

Another couple of foods to look out for if you feel rotten is corn and soy. Soy is in mayo, most vitamins and vegetable oil, practically all processed foods (even tuna). Corn and soy protein structure is, from what I understand, similar enough to make your autoimmune system fight again.

Some of us have a problem with grains, too. I can't handle gluten-free oats or quinoa, but some people have had good luck with them. Others can't tolerate tapioca.

I couldn't tolerate dairy for a long time. I reintroduced it and was doing just fine. Then I started having reactions to dairy. Tonight I gave dairy a challenge.

So the other advice I have is if you're questioning other food intolerances, plan ahead. (I had the dairy on a Friday because I don't have to work until Monday. You may not want to know this, but a noted MD expert in celiac disease was quoted saying it can take 1-2 years to improve.

[cahill]

Hi Gfh,

Another couple of foods to look out for if you feel rotten is corn and soy. Soy is in mayo, most vitamins and vegetable oil, practically all processed foods (even tuna). Corn and soy protein structure is, from what I understand, similar enough to make your autoimmune system fight again.

Soy is evil,evil I say

[GFH33]

Hi Gfh,

Another couple of foods to look out for if you feel rotten is corn and soy. Soy is in mayo, most vitamins and vegetable oil, practically all processed foods (even tuna). Corn and soy protein structure is, from what I understand, similar enough to make your autoimmune system fight again.

Some of us have a problem with grains, too. I can't handle gluten-free oats or quinoa, but some people have had good luck with them. Others can't tolerate tapioca.

I couldn't tolerate dairy for a long time. I reintroduced it and was doing just fine. Then I started having reactions to dairy. Tonight I gave dairy a challenge.

So the other advice I have is if you're questioning other food intolerances, plan ahead. (I had the dairy on a Friday because I don't have to work until Monday. You may not want to know this, but a noted MD expert in celiac disease was quoted saying it can take 1-2 years to improve.

Thank you for your help! It seems like most people have problems with soy and corn. I haven't eliminated them, but maybe I should give it a try. Do you avoid gluten-free foods on the market? I eat a lot of the gluten-free frozen meals on the market because they're a easy, quick lunch but I'm wondering if those might be the type of gluten-free foods that are hard to digest like you said. What are the typical type of foods you eat? I'm finding it hard to eat different things.

I appreciate your honesty, and yes, I have heard that it may take a few years to fully recover. I'm just wondering, do you know once people "fully recover" can they live a normal life? Meaning, can they avoid worrying about getting sick or feeling tired all the time while maintaing a gluten-free diet? Thanks again!

[cyberprof]

I'm sorry you're having trouble. I posted a research article a few weeks ago that showed that adults with damage took from 2-5 years to heal. Not that you'll be this bad for that long, just that in that view, 6 months isn't very long.

Have you checked all your vitamins and supplements for gluten? Lipstick, lip gloss, face lotions? Shampoo? Toothpaste?

How about kissing your SO/spouse/partner after s/he eats gluten? Are you in a truly gluten-free house? Do you eat out?

Besides eliminating CC, I usually suggest a limited menu and an elimination diet for those who start the diet. You could try this for a week or two and see if it helps: Chicken, turkey, plain white rice (no spices, oils or sauce), cooked pears, green beans or zuchini. Three meals a day for a week or so. Then add in sweet potatoes, applesauce, beef, fish. See how it goes adding one thing (cook all veggies and fruit and limit fat) at a time and leaving soy, corn, dairy, eggs, nuts and nightshades (tomatoes, eggplant, peppers and white potatoes) for last.

If you try the elimination diet and it doesn't help, you may have something else going on. But try this. The probiotics can't hurt (as long as they're gluten-free) but I don't know much about enzymes.

[AVR1962]

You mentioned your stomach is upset every day. Sounds like you need to do something to protect the stomach. If it is a burning use a reflux med eventhough you might not think you have acid reflux. Look at a low acid diet, that will also help med the issues in the stomach. If it is a matter of feeling food is not digesting properly, take smaller portions, watch the amount of meat- 3 to 4 oz per serving. And digestive enzymes could help. If you are drinking caffeine or soda, really try cutting it out of your diet.

I'm kind of thinking that you may have another food affecting you like others have replied. If you have not eliminated dairy for now that would be a good start. Dairy causes my stomach to be very noisy.

Besides looking at everything you consume and use, take at look at your supplements as well. Are you getting enough B12, iron, magnesium, cacium and vit D? Are you getting enough sun? I have found the sunshine on my skin seemingly has helped my body absorb nutrients as I made some quick strides lately being in the sun. I have been gluten-free since April as well.

[pricklypear1971]

Enzymedica is available online or vitamin stores. It's sold under brand names Digest Gold, etc. Enzymedica is the manufacturer.

A good probiotic will help, too. I use PB8, but there are lots out there. Look for a multi-strain one.

[GFH33]

I'm sorry you're having trouble. I posted a research article a few weeks ago that showed that adults with damage took from 2-5 years to heal. Not that you'll be this bad for that long, just that in that view, 6 months isn't very long.

Have you checked all your vitamins and supplements for gluten? Lipstick, lip gloss, face lotions? Shampoo? Toothpaste?

How about kissing your SO/spouse/partner after s/he eats gluten? Are you in a truly gluten-free house? Do you eat out?

Besides eliminating CC, I usually suggest a limited menu and an elimination diet for those who start the diet. You could try this for a week or two and see if it helps: Chicken, turkey, plain white rice (no spices, oils or sauce), cooked pears, green beans or zuchini. Three meals a day for a week or so. Then add in sweet potatoes, applesauce, beef, fish. See how it goes adding one thing (cook all veggies and fruit and limit fat) at a time and leaving soy, corn, dairy, eggs, nuts and nightshades (tomatoes, eggplant, peppers and white potatoes) for last.

If you try the elimination diet and it doesn't help, you may have something else going on. But try this. The probiotics can't hurt (as long as they're gluten-free) but I don't know much about enzymes.

I appreciate the perspective, and yes, comparing 6 months to 2-5 years is a big difference.

I have checked all of my products (i.e.; face wash, toothpaste, etc.) and none of them contain gluten. My partner and I are careful about preventing cc and we very rarely eat out. When I do eat out I ask for a gluten-free menu, but then again, that is not 100% safe which is why I try to avoid eating outside of my own kitchen.

Thanks for the tip on the elimination diet. I'll try that and see how it goes. Have you noticed any symptoms or reactions to the probiotics?

[GFH33]

You mentioned your stomach is upset every day. Sounds like you need to do something to protect the stomach. If it is a burning use a reflux med eventhough you might not think you have acid reflux. Look at a low acid diet, that will also help med the issues in the stomach. If it is a matter of feeling food is not digesting properly, take smaller portions, watch the amount of meat- 3 to 4 oz per serving. And digestive enzymes could help. If you are drinking caffeine or soda, really try cutting it out of your diet.

I'm kind of thinking that you may have another food affecting you like others have replied. If you have not eliminated dairy for now that would be a good start. Dairy causes my stomach to be very noisy.

Besides looking at everything you consume and use, take at look at your supplements as well. Are you getting enough B12, iron, magnesium, cacium and vit D? Are you getting enough sun? I have found the sunshine on my skin seemingly has helped my body absorb nutrients as I made some quick strides lately being in the sun. I have been gluten-free since April as well.

It's not necessarily an upset stomach that I deal with everyday, but lower in my intestines it's bloating, cramping, and a need for the bathroom. It usually only affects me the first portion of the day and then I feel better in the afternoons and evenings. My doctor tried me on pepcid, but it caused more problems than it helped so I discontinued my use of it. I've cut back on my coffee intake, but I should cut back on my soda intake as well. Your tip about dairy might be it because I had some cheese last night and afterwards I felt sick and my stomach was really making noises. When you eliminate dairy do you just eliminate the obvious things like milk, cheese, butter or everything that contains dairy?

[GFH33]

Enzymedica is available online or vitamin stores. It's sold under brand names Digest Gold, etc. Enzymedica is the manufacturer.

A good probiotic will help, too. I use PB8, but there are lots out there. Look for a multi-strain one.

Okay, I found it online. Thank you!

[AVR1962]

It's not necessarily an upset stomach that I deal with everyday, but lower in my intestines it's bloating, cramping, and a need for the bathroom. It usually only affects me the first portion of the day and then I feel better in the afternoons and evenings. My doctor tried me on pepcid, but it caused more problems than it helped so I discontinued my use of it. I've cut back on my coffee intake, but I should cut back on my soda intake as well. Your tip about dairy might be it because I had some cheese last night and afterwards I felt sick and my stomach was really making noises. When you eliminate dairy do you just eliminate the obvious things like milk, cheese, butter or everything that contains dairy?

Yes, and again read labels as there is dairy in alot of things as well. Hard cheeses should be fine as the longer the aging process the more lactose goes out of the cheese but for now it might be worth trying. There are butters on the market that are lactose free.

[Marilyn R]

Regarding dairy, it wasn't a lactose intolerance in my situation, but of course that doesn't mean that we'll have similar reactions. I had to avoid the casein protein. That meant eliminating hard cheeses as well as a host of other processed foods like lunch meats.

I think it's best to go as simple as possible. I remember being very frustrated at the six month period. It seemed like everything was making me sick, but not quite as sick as I was before I went gluten-free. I kept having to tell myself to suck it up, Grandma and Mom went through worse periods. But it was hard trying to cope, so I get where you're coming from.

Regarding processed gluten-free products, you might want to lay off them for awhile. I'm starting to purchase them again now, but my gut is healed and my autoimmune system seems to be winding down a bit, not attacking as much.

At first it's a pain, but spending some time on the weekend cooking and planning really pays off. I bought a 5 lb. pressure cooker, which is probably the best investment I've made.

I make homemade chicken soup that is absolutely delicious. (I even have it for breakfast sometimes.) I make it with root vegetables and a few spices, then add rice or rice noodles later (or not). That freezes really well.

Rice has never bothered me, but it has bugged a few people. I remember searching for the least allergenic foods and top allergic foods, and trying to stick with the former and avoid the latter for several months.

For months, I would buy romaine hearts, chop, wash and dry them in a salad spinner. Lunch would be romaine lettuce with a protein, chopped hearts of palm, shredded carrots, any leftover vegetable and a basic dressing of a squirt of a lime and a little olive oil. I did that for 15 months (unless I packed a thermos of soup) and all of a sudden I can't stand salad anymore! (Oddly, cabbage is appealing though, so I can do coleslaw with a vinagrette and fruit or dried fruit.)

So that this isn't so boring, it might be a great time to learn a new cooking style. Most Indian recipes are naturally gluten-free (free on the web or from cookbooks at the library) or learning how to use a pressure cooker.

If you like Thai or Oriental foods, a reasonable substitution for soy sauce is coconut aminos or I actually like a tsp of fish sauce mixed with a tsp of honey and a tsp of lemon or lime juice better.

It really does get better! It takes some time...Check the cooking thread for other ideas about breakfast, lunch and dinner ideas. Good luck, wish you well.

[Ladybugz]

It's not necessarily an upset stomach that I deal with everyday, but lower in my intestines it's bloating, cramping, and a need for the bathroom. It usually only affects me the first portion of the day and then I feel better in the afternoons and evenings. My doctor tried me on pepcid, but it caused more problems than it helped so I discontinued my use of it. I've cut back on my coffee intake, but I should cut back on my soda intake as well. Your tip about dairy might be it because I had some cheese last night and afterwards I felt sick and my stomach was really making noises. When you eliminate dairy do you just eliminate the obvious things like milk, cheese, butter or everything that contains dairy?

[/quo

Hello!

Ive only been diagonsed for a litte over a year. Even with being a bit over zelous about researxhing and reading labels, there are a few items that tripped me up with gluten.

Here are a few items Ive had issues with: using the same toothpaste as my gluten eating husband, flinstones vitamins, and my dishwasher!

Sometimes gluten can be hidden from your "previous life" in places like your utensil drawer tiny crumbs hang out everywhere! Even your keyboard and mouse.

I really hope you get to feeling better, I have had the same stomach noises and problems off and on since being diagnosed. My GI also told me i have ulcers and some other issues with my stomach, so I take prilosec,and for a while I too meds that helped stop my colon from cramping. In the beginning that really helped.