So Confused

[djshep]

Hello--I have been about 4 weeks of this new glutten-free lifestyle. Was diagnosed about a month ago and had never heard of Celiac. Had absolutely no clue what was happening to me--I really thought my thyroid was just out of whack again. My doctor had insisted on the test & biospy because I was very anemmic. I am trying my best to do the diet right and heal my body, but I am terribly confused. I have done my best to remove all glutten from my diet and I have not run out to buy a bunch of new gluten-free products mainly due to the expense. I am trying to eat healthy--lots of fresh fruit, sauted veggies, rice, chicken & beef, cheese. I dearly loved pasta and have tried rice pasta (yuck) and quinoa (yum). I don't feel better or worse-it is just the same except I am so tired. I have absolutely no energy.

How do Iknow if I am doing the right things? I am keeping a food diary--saw a nutrionist and she suggested the diary so she could look at it in a couple of weeks. Unfortunately she had to have some emergency surgery and I will not be able to return for another 5 weeks. What do I need to do to monitor myself and how do I know if I am doing the right things? How do I know if I am screwing up terribly?

Hope I don't sound whiny. I am really trying to see this as an opportunity to eat healthy and feel better. I have wonderful support systems.

thanks

Donna

[Wolicki]

It might help us help you if you describe your lingering symptoms.

In any case, 4 weeks is not enough time to heal. It's different for everyone, but 4 weeks is awfully soon. I felt quite a bit better in the first few weeks, but then all kinds of other issues cropped up. Terrible gas, bloating (which I never had pre dx). Turned out it was several issues:

Secondary food intolerances

lack of enzymes in my digestive system

Low stomach acid

So I eliminated: dairy, all grains, corn, broccoli, caulifower, nuts, seeds, nightshades. Good news is I can have all these again, after 7 months, except for popcorn. Both my son and I react violently to popcorn of any kind....even plain popped in a pot If I get glutened accidentally, then dairy is the first to go. I figured out the foods in an extreme way. I got tired of being sick all the time, so I ate nothing but homemade chicken soup for a week (chicken, carrots, turnips, onions, celery, parsley, garlic). Then added things back in one at a time.

I take HCL with pepsin before every meal, and enzymes after.

I also take probiotics every am.

I am now, for the most part, completely normal, as long as I don't get glutened.

List your symptoms to see if we can help

Janie

[Ahorsesoul]

Just how gluten free are you? Look at medications, supplements, drinks, toothpaste and other personal care products. Is your kitchen gluten free or are you getting cross contaminated? Using the same plastic ware, wood bread board and toaster could mean you are still getting glutened. Even a little bit of gluten will hold you back from healing.

[djshep]

Thanks for responding. I have checked meds and vitamins. I think everything is glutten free. I continue to have constipation issues, muscle pain and cramping, and fatigue. I am sure I need more time to heal. I guess I just don't know what "normal" is anymore. My doctor said I would be feeling great in a couple of months. He is a very encouraging--I really feel lucky about that. My plan is to feel better in few months--just hope my body cooperates.

Thanks

Donna

[happygirl]

Could you share a few days worth of your food diary - I'm sure people can help pinpoint if there are any red flags (prob better than a nutritionist, in terms of if it is gluten-free or not).

[jackay]

It might help us help you if you describe your lingering symptoms.

In any case, 4 weeks is not enough time to heal. It's different for everyone, but 4 weeks is awfully soon. I felt quite a bit better in the first few weeks, but then all kinds of other issues cropped up. Terrible gas, bloating (which I never had pre dx). Turned out it was several issues:

Secondary food intolerances

lack of enzymes in my digestive system

Low stomach acid

So I eliminated: dairy, all grains, corn, broccoli, caulifower, nuts, seeds, nightshades. Good news is I can have all these again, after 7 months, except for popcorn. Both my son and I react violently to popcorn of any kind....even plain popped in a pot If I get glutened accidentally, then dairy is the first to go. I figured out the foods in an extreme way. I got tired of being sick all the time, so I ate nothing but homemade chicken soup for a week (chicken, carrots, turnips, onions, celery, parsley, garlic). Then added things back in one at a time.

I take HCL with pepsin before every meal, and enzymes after.

I also take probiotics every am.

I am now, for the most part, completely normal, as long as I don't get glutened.

List your symptoms to see if we can help

Janie

Janie,

How did you find out your other food intolerances? Through blood work, I tested intolerant to so many foods. My doctor wants me eating the remaining foods on a four day rotation so I don't develop intolerances to them.

I gave up gluten about 9 months ago but only became aware of cross contamination about three months ago. I started avoiding the other foods I tested intolerant to two months ago. I have a spell where I do better for a while and then get worse. I don't know if I'm getting glutened or if it is other intolerances that are bothering my.

My symptoms are diarrhea, gas, headache, back pain, insomnia and depression. I always thought only gluten was causing the diarrhea but now I'm not so sure.

I am thinking of starting a very simple diet such as chicken, carrots and quinoa for a while and see if I feel better and then slowly adding foods.

[sandsurfgirl]

I think it's just too soon. There is a withdrawal period and a healing period and it takes time. I'm on about week 8 and saw just a little improvement until week 5, but my gut issues got really bad before they got better. I'm still not 100% but I'm way way way better now.

[Wolicki]

Janie,

How did you find out your other food intolerances? Through blood work, I tested intolerant to so many foods. My doctor wants me eating the remaining foods on a four day rotation so I don't develop intolerances to them.

I gave up gluten about 9 months ago but only became aware of cross contamination about three months ago. I started avoiding the other foods I tested intolerant to two months ago. I have a spell where I do better for a while and then get worse. I don't know if I'm getting glutened or if it is other intolerances that are bothering my.

My symptoms are diarrhea, gas, headache, back pain, insomnia and depression. I always thought only gluten was causing the diarrhea but now I'm not so sure.

I am thinking of starting a very simple diet such as chicken, carrots and quinoa for a while and see if I feel better and then slowly adding foods.

Jackay,

Trial and error, mostly. For about a month after going gluten free, I looked like I was 8 months pregnant. It was horrible and painful. Trapped gas in my chest and abdomen. I had started eating a lot of gluten free grains- rice, quinoa, amaranth, etc. Then one day, I read here about intolerances. So I stopped eating the major allergens, except dairy. I kept eating that. I gave up on dairy after I realized I was still having gas and pain and really strange bowel habits. I had constant C for 10 years, never D. All of a sudden, constant D I eliminated all grains, broccoli, legumes, cauliflower, nuts, seeds, then finally dairy and felt much better. Then I was still getting gas and bloating with nightshades. So then I gave those up. Tomatoes were the hardest- harder than gluten for sure.

I used Livestrong.com to track my food and reactions. At about 6 months, I could eat it all again, except for nightshades. Those came back at 7 months. I am still dairy light, because any time I get accidentally glutened, the dairy issue comes back.

I think it just takes time, and fixing leaky gut issues before the food intolerances go away. I take lots of probiotics and ate lots of yogurt, and I think that helped.

[jackay]

Jackay,

Trial and error, mostly. For about a month after going gluten free, I looked like I was 8 months pregnant. It was horrible and painful. Trapped gas in my chest and abdomen. I had started eating a lot of gluten free grains- rice, quinoa, amaranth, etc. Then one day, I read here about intolerances. So I stopped eating the major allergens, except dairy. I kept eating that. I gave up on dairy after I realized I was still having gas and pain and really strange bowel habits. I had constant C for 10 years, never D. All of a sudden, constant D I eliminated all grains, broccoli, legumes, cauliflower, nuts, seeds, then finally dairy and felt much better. Then I was still getting gas and bloating with nightshades. So then I gave those up. Tomatoes were the hardest- harder than gluten for sure.

I used Livestrong.com to track my food and reactions. At about 6 months, I could eat it all again, except for nightshades. Those came back at 7 months. I am still dairy light, because any time I get accidentally glutened, the dairy issue comes back.

I think it just takes time, and fixing leaky gut issues before the food intolerances go away. I take lots of probiotics and ate lots of yogurt, and I think that helped.

Janie,

Some of your symptoms sound typical to me. I also had C and gas for over ten years along with constant fatigue . I started taking a multi-strain probiotic which helped the C and gas but not the fatigue. Then a couple years down the line, I developed severe insomnia and anxiety. I suffered with that for a few years before the D kicked in. Nothing helped the D until I gave up gluten. I get the D back every now and and think I get CC since my other intolerances don't seem to cause it. I could be wrong, though. Whenever the D hits, insomnia accomanies it.

How does Livestrong.com work? When did you start adding back foods and how slowly did you add them?

Quinoa, millet and buckwheat tested acceptable to me. I am thinking of starting with chicken, carrots and quinoa to see if I do better. I hope I don't have to give up all grains.

This past weekend was a bad one with D, insomnia, depression and headache. The headache is lingering but he D seems to have passed. I got some sleep last night after it taking hours to fall asleep. The depression is still there but not as severe.

Jackay

[Wolicki]

Janie,

Some of your symptoms sound typical to me. I also had C and gas for over ten years along with constant fatigue . I started taking a multi-strain probiotic which helped the C and gas but not the fatigue. Then a couple years down the line, I developed severe insomnia and anxiety. I suffered with that for a few years before the D kicked in. Nothing helped the D until I gave up gluten. I get the D back every now and and think I get CC since my other intolerances don't seem to cause it. I could be wrong, though. Whenever the D hits, insomnia accomanies it.

How does Livestrong.com work? When did you start adding back foods and how slowly did you add them?

Quinoa, millet and buckwheat tested acceptable to me. I am thinking of starting with chicken, carrots and quinoa to see if I do better. I hope I don't have to give up all grains.

This past weekend was a bad one with D, insomnia, depression and headache. The headache is lingering but he D seems to have passed. I got some sleep last night after it taking hours to fall asleep. The depression is still there but not as severe.

Jackay

Livestrong- you just go to the site, set up an account with a user name and password, go to the daily plate, then start adding things. It's very user friendly.

I started with trying a little spoonful of rice when I made it for my kids. That went fine. The next time I had a tablespoon, then so on. Always start with a taste, then go from there. Wait a few days before trying it again, or before trying anything else.

Had you ever eaten quinoa, buckwheat and millet prior to going gluten free? I think the way those tests work, you have to have some antibodies in your system, which you would not have if you have never tried them. Anyway, grain free wasnt bad at all. I am actually doing Atkins now, because I gained so much weight so fast, as a result of malnutrition.

My test diet was chicken soup with turnips, carrots, onions, celery, chicken and parsley. I ate only that for a week, then started adding things. First to come back: peanut butter, woohoo!. Then all nuts and seeds, then grains, then legumes, dairy, nightshades. I am still afraid of broc and cauliflower I don't like them enough to test it yet. I will wait on that one, LOL@

Whatever you choose to do, focus on what you CAN have, not what you can't. Giving up anything is worth it to feel better! I can't tell you how nice it is to sleep through the night, not be in pain, no anxiety or depression. It's good to feel normal. I can enjoy my kids again!

[jackay]

Livestrong- you just go to the site, set up an account with a user name and password, go to the daily plate, then start adding things. It's very user friendly.

I started with trying a little spoonful of rice when I made it for my kids. That went fine. The next time I had a tablespoon, then so on. Always start with a taste, then go from there. Wait a few days before trying it again, or before trying anything else.

Had you ever eaten quinoa, buckwheat and millet prior to going gluten free? I think the way those tests work, you have to have some antibodies in your system, which you would not have if you have never tried them. Anyway, grain free wasnt bad at all. I am actually doing Atkins now, because I gained so much weight so fast, as a result of malnutrition.

My test diet was chicken soup with turnips, carrots, onions, celery, chicken and parsley. I ate only that for a week, then started adding things. First to come back: peanut butter, woohoo!. Then all nuts and seeds, then grains, then legumes, dairy, nightshades. I am still afraid of broc and cauliflower I don't like them enough to test it yet. I will wait on that one, LOL@

Whatever you choose to do, focus on what you CAN have, not what you can't. Giving up anything is worth it to feel better! I can't tell you how nice it is to sleep through the night, not be in pain, no anxiety or depression. It's good to feel normal. I can enjoy my kids again!

Thanks Wolicki,

I'll give this a try.

No, I never ate millet, quinoa or buckwheat before going gluten free. I did test intolerant to many foods that I hadn't ever eaten or hadn't eaten in a very long time which are veal,venison, mackerel, beets, duck, lamb, sheep's milk, anchovy, carob, crayfish, kelp, mussel and tilapia. I question the seafood as many other kinds did test acceptable.

Tomorrow I'm going to buy some turnips and substitute those for the quinoa for a while and see what happens. Today I still have some gas. I wasn't bothered with that much before I went gluten free so do know other intolerances are a problem. Onions are supposably acceptable but do give me gas. I tested mildly intolerant to rice and that is in my probiotics and melatonin. I tested moderately intolerant to corn and that is in an antidepressant I take. I've tried going off it several times and then get so depressed when the D hits that I go back on it.

I thought my malabsorption problems were severe but the only nutrient I tested low on was B12. I was supplementing with calcium and D3 because of hyperparathyroidism so know they would have been low if not for the supplements.

Right now I am underweight and trying to gain. Every time I gain a pound or two, I get the terrible D again and it is gone like that. It just seems to be a cycle that repeats over and over again. I was putting on weight over the years but not too overweight. I lost it all and more so very fast.

I'm not giving up but really don't feel I will ever feel normal again without insomnia, pain, depression or anxiety.

[Wolicki]

Thanks Wolicki,

I'll give this a try.

No, I never ate millet, quinoa or buckwheat before going gluten free. I did test intolerant to many foods that I hadn't ever eaten or hadn't eaten in a very long time which are veal,venison, mackerel, beets, duck, lamb, sheep's milk, anchovy, carob, crayfish, kelp, mussel and tilapia. I question the seafood as many other kinds did test acceptable.

Tomorrow I'm going to buy some turnips and substitute those for the quinoa for a while and see what happens. Today I still have some gas. I wasn't bothered with that much before I went gluten free so do know other intolerances are a problem. Onions are supposably acceptable but do give me gas. I tested mildly intolerant to rice and that is in my probiotics and melatonin. I tested moderately intolerant to corn and that is in an antidepressant I take. I've tried going off it several times and then get so depressed when the D hits that I go back on it.

I thought my malabsorption problems were severe but the only nutrient I tested low on was B12. I was supplementing with calcium and D3 because of hyperparathyroidism so know they would have been low if not for the supplements.

Right now I am underweight and trying to gain. Every time I gain a pound or two, I get the terrible D again and it is gone like that. It just seems to be a cycle that repeats over and over again. I was putting on weight over the years but not too overweight. I lost it all and more so very fast.

I'm not giving up but really don't feel I will ever feel normal again without insomnia, pain, depression or anxiety.

Jackay

PM me your daily diet. Let me see if I can help. I had secondary hyperparathyroidism too. Was fine before gluten free, then my body went CRAZY and my thyroid and parathyroid went wonky. After 5 months on Caltate +D plus 50,000 IU Vitamin D 3xweek, my parathyroid is once again normal.

I've also been taking these supps:

probiotics, enzymes, HCL, fish oil, curcumin, Lglutamine and CoQ10. I can't help but think that some of these things have helped to cure my leaky gut and that is why my intolerances went away.

I tend to be a bit of a skeptic when it comes to all that testing. I think you can figure it out, "with a little help from your friends."

[Reba32]

I read an article recently about fructose intolerance that made me go hmmm...

I don't eat a lot of sweet fruits or vegetables, as I am normally on a low carb diet, I enjoy them only occasionally, and in controlled portions (half an apple or pear at a time for example).

Fructose is one of the naturally occuring sugars in fruits. Fruits in and of themselves are healthy for us yes, but, if you have damaged guts as we Celiacs do, you may not be able to digest fructose, and it could be causing further upset. Perhaps limiting your sweet fruits, as well as manufactured foods that contain high fructose corn syrup or fructose as sweetener, might help. I'm not sure if doctors regularly test for fructose intolerance when they're testing for other food intolerances.

High fructose corn syrup is rampant in the US in most manufactured and packaged foods. Everything from breakfast cereal, to soda pop, to BBQ sauce and ketchup. HFCS not only could irritate already damaged intestines, but it is processed by the liver and stored in the body as fat, so if you're trying to lose weight, or keep your cholesterol and triglycerides in check, give up the fructose!

While your intestine is healing, you may also want to avoid packaged foods entirely, and stick with whole natural foods like vegetables and meats, nuts and seeds. Once you start to feel better, you can try the gluten free alternative packaged foods.

Me I never touch them though. Gluten free is most certainly NOT low carb! slim pickin's for us low carbin' Celiacs I must say.

[jackay]

I read an article recently about fructose intolerance that made me go hmmm...

I don't eat a lot of sweet fruits or vegetables, as I am normally on a low carb diet, I enjoy them only occasionally, and in controlled portions (half an apple or pear at a time for example).

Fructose is one of the naturally occuring sugars in fruits. Fruits in and of themselves are healthy for us yes, but, if you have damaged guts as we Celiacs do, you may not be able to digest fructose, and it could be causing further upset. Perhaps limiting your sweet fruits, as well as manufactured foods that contain high fructose corn syrup or fructose as sweetener, might help. I'm not sure if doctors regularly test for fructose intolerance when they're testing for other food intolerances.

High fructose corn syrup is rampant in the US in most manufactured and packaged foods. Everything from breakfast cereal, to soda pop, to BBQ sauce and ketchup. HFCS not only could irritate already damaged intestines, but it is processed by the liver and stored in the body as fat, so if you're trying to lose weight, or keep your cholesterol and triglycerides in check, give up the fructose!

While your intestine is healing, you may also want to avoid packaged foods entirely, and stick with whole natural foods like vegetables and meats, nuts and seeds. Once you start to feel better, you can try the gluten free alternative packaged foods.

Me I never touch them though. Gluten free is most certainly NOT low carb! slim pickin's for us low carbin' Celiacs I must say.

Reba,

I do expect fructose to be part of my problem. I was relying heavily on fruits and starchy vegetables for the calories.

As far as testing for the food intolerances, fructose showed up as a moderate intolerance yet many fruits showed up as acceptable. My doctor said that the acceptable fruits would be O.K. but I couldn't have anything with added fructose.

I was eating lots of millet and quinoa to help fill me up. I lost 35 pounds and would like to gain at least five back. I do gain a few and then get hit with the dreaded D and lose again. I guess I should feel fortunate that I've somewhat stabilized as far as weight loss goes. By cutting out or down on the grains or fruit, I am cutting out lots of calories.

I question if the nuts and seeds are too much for my system right now. I'm not eating any processed foods either.