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10 Months Gluten Free And Still Not Recovered


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#1 gary'sgirl

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Posted 23 August 2010 - 12:49 PM

Has anyone else experienced still feeling sick after being off of gluten for more than 10 months?

I am very careful about CC. All my cleaning products are gluten-free, as well as toiletries. I don't eat out and I don't eat any packaged products, just whole foods.

I have found many other foods that I have problems with as well including:
~nightshades,
~broccoli/cabbage family,
~onion family,
~grains (I have just add a little bit of brown rice back into my diet - so far seems okay),
~all nuts,
~legumes,
~melons,
~citrus,
~mustard,
~meats
~I have cut all sweeteners out of my diet a couple of weeks ago to see if that would help - so far not too much of a difference, but I wasn't having much in the first place.
~I cut all dairy out of my diet for several months, then add it back in and it doesn't seem to be a problem (I took it out of my diet two different times for two or more months each time), although I don't really have milk much, just some cheese some times and on occasion yogurt (for some reason yogurt grosses me out most of the time - I think it's a texture thing),

There are a few other foods that I have cut out, but I can't remember right now.

The majority of my symptoms are neurological, but I do have digestive issues too. I was diagnosed through biopsy and my doctor had no question that it was anything other than Celiac.

I couldn't get my docs to test for very many vitamin levels, but we did find that I was low on D (I am taking an extra supplement of D and B12), and maybe a little under what I should be for B12, but still in normal ranges, I was high on folic acid, which the doctor was pretty sure meant a systemic bacterial overgrowth. I was treated with a very strong antibiotic and have been on probiotics since.

My household is 100 percent gluten free. We changed all our bake ware and utensils that could have been a problem, and of course all lotions, chapstik, soaps, etc... My husband doesn't even eat gluten when he isn't home because he doesn't like to worry that he might some how get me :P with it. I think I may even be reacting to smelling gluten some times - I seem to be extremely sensitive.

Do any of you have any thoughts or advice? Even some encouraging words or stories might help. :)

As you all know, this is a very hard and lonely road to travel. Thanks for reading and sorry if it's disjointed - I have a hard time putting words together and my head is always in a fog.

Bless you all.
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#2 adab8ca

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Posted 23 August 2010 - 04:59 PM

Has anyone else experienced still feeling sick after being off of gluten for more than 10 months?

I am very careful about CC. All my cleaning products are gluten-free, as well as toiletries. I don't eat out and I don't eat any packaged products, just whole foods.

I have found many other foods that I have problems with as well including:
~nightshades,
~broccoli/cabbage family,
~onion family,
~grains (I have just add a little bit of brown rice back into my diet - so far seems okay),
~all nuts,
~legumes,
~melons,
~citrus,
~mustard,
~meats
~I have cut all sweeteners out of my diet a couple of weeks ago to see if that would help - so far not too much of a difference, but I wasn't having much in the first place.
~I cut all dairy out of my diet for several months, then add it back in and it doesn't seem to be a problem (I took it out of my diet two different times for two or more months each time), although I don't really have milk much, just some cheese some times and on occasion yogurt (for some reason yogurt grosses me out most of the time - I think it's a texture thing),

There are a few other foods that I have cut out, but I can't remember right now.

The majority of my symptoms are neurological, but I do have digestive issues too. I was diagnosed through biopsy and my doctor had no question that it was anything other than Celiac.

I couldn't get my docs to test for very many vitamin levels, but we did find that I was low on D (I am taking an extra supplement of D and B12), and maybe a little under what I should be for B12, but still in normal ranges, I was high on folic acid, which the doctor was pretty sure meant a systemic bacterial overgrowth. I was treated with a very strong antibiotic and have been on probiotics since.

My household is 100 percent gluten free. We changed all our bake ware and utensils that could have been a problem, and of course all lotions, chapstik, soaps, etc... My husband doesn't even eat gluten when he isn't home because he doesn't like to worry that he might some how get me :P with it. I think I may even be reacting to smelling gluten some times - I seem to be extremely sensitive.

Do any of you have any thoughts or advice? Even some encouraging words or stories might help. :)

As you all know, this is a very hard and lonely road to travel. Thanks for reading and sorry if it's disjointed - I have a hard time putting words together and my head is always in a fog.

Bless you all.

Yikes, this sounds hellish :( I am currently waiting for biopsy but my symptoms are neurological (ie bad painful neuropathy and high antibodies). I saw a dietician and she said it can take a year or more to heal and feel better....Not to discourage you, these things may just take some time. I am no expert, but I certainly do wish you well! (Interesting about the folic acid,mine was really high as well but nobody seemed concerned!)
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TTG >200 (normal <10)
IgA gliadin 24 (normal <11)
IgG gliadin 38 (normal <11)
Endoscopy showed damage that looked like "classic celiac", biopsy showed total villous atrophy
Started gluten-free diet Aug 31, 2010
Only real symptoms are huge weight loss and neuropathy

#3 gary'sgirl

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Posted 23 August 2010 - 05:26 PM

Yikes, this sounds hellish :( I am currently waiting for biopsy but my symptoms are neurological (ie bad painful neuropathy and high antibodies). I saw a dietician and she said it can take a year or more to heal and feel better....Not to discourage you, these things may just take some time. I am no expert, but I certainly do wish you well! (Interesting about the folic acid,mine was really high as well but nobody seemed concerned!)


Thanks for replying, adab8ca. It actually doesn't discourage me to hear that it might take a year or more, I am looking for just that sort of thing. So far I don't think I have read of any one personally taking this long to start to feel better. Some people say they took a "long" time at 6 to 8 months, but I have yet to hear of someone taking longer than 8 months.

Thanks for the encouragement and I hope you figure out what is wrong with you and that it doesn't take as long to heal for you.
When are you supposed to have the biopsy?
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#4 Chakra2

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Posted 23 August 2010 - 06:38 PM

With that list of foods you don't tolerate, I hesitate to ask this but what about soy and corn? Those 2 foods cause me GI and neuro symptoms and it really helped once I got rid of them. Many of my favorite vitamins and supplements had to go.

Also, it sounds like you are very careful at home. Do you get to eat most of your meals there? I find that even "safe" restaurant food can still bother me and I'm 7.5 months gluten-free. Dropping the corn, soy (and dairy, for me) and not eating out has really improved my ratio of good days to bad!

One last thought, I started seeing a holistic nutritionist at a chiropractor's office. She gave me advice about diet and supplements for healing that I have not heard anywhere else. Maybe someone like that could give you some beyond-the-mainstream advice that might help. I started feeling tons better once I followed the nutritionist's advice. I thought of it because of your comment about the vitamin levels. Seems like holistic and alternative health care practitioners sometimes consider different levels of vitamins to be "normal" and can help you safely boost levels to address specific problems in a way that regular docs might not think to do.
Even acupuncture or energy healing or some other complementary medical practice might be helpful at this point to tap into new healing for your body. Not sure how you feel about any of that but it sounds like you've got the gluten-free basics down so I was trying to think of other ideas.

Chakra2
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#5 adab8ca

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Posted 23 August 2010 - 07:05 PM

Thanks for replying, adab8ca. It actually doesn't discourage me to hear that it might take a year or more, I am looking for just that sort of thing. So far I don't think I have read of any one personally taking this long to start to feel better. Some people say they took a "long" time at 6 to 8 months, but I have yet to hear of someone taking longer than 8 months.

Thanks for the encouragement and I hope you figure out what is wrong with you and that it doesn't take as long to heal for you.
When are you supposed to have the biopsy?

My biopsy is next Tuesday.....waiting patiently......I think the neuro crap can take a long time to heal. I just want to know what's wrong with me (as I know you do for yourself as well)
Keep us posted!!!

ada
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TTG >200 (normal <10)
IgA gliadin 24 (normal <11)
IgG gliadin 38 (normal <11)
Endoscopy showed damage that looked like "classic celiac", biopsy showed total villous atrophy
Started gluten-free diet Aug 31, 2010
Only real symptoms are huge weight loss and neuropathy

#6 Streetlegal

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Posted 23 August 2010 - 07:53 PM

I took six months to feel any better. I had a colonoscopy and was found to have microscopic colitis (inflammation of large intestine). There is not much I can do about it, though it does tend to go into remittance of its own accord. Rather than giving up all those foods, you might a) find out if your gluten antibody levels have decreased B) see if it is worth testing for microscopic colitis, quite common in celiacs. At least now I know what I am dealing with.
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#7 gary'sgirl

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Posted 23 August 2010 - 07:57 PM

With that list of foods you don't tolerate, I hesitate to ask this but what about soy and corn? Those 2 foods cause me GI and neuro symptoms and it really helped once I got rid of them. Many of my favorite vitamins and supplements had to go.

Also, it sounds like you are very careful at home. Do you get to eat most of your meals there? I find that even "safe" restaurant food can still bother me and I'm 7.5 months gluten-free. Dropping the corn, soy (and dairy, for me) and not eating out has really improved my ratio of good days to bad!

One last thought, I started seeing a holistic nutritionist at a chiropractor's office. She gave me advice about diet and supplements for healing that I have not heard anywhere else. Maybe someone like that could give you some beyond-the-mainstream advice that might help. I started feeling tons better once I followed the nutritionist's advice. I thought of it because of your comment about the vitamin levels. Seems like holistic and alternative health care practitioners sometimes consider different levels of vitamins to be "normal" and can help you safely boost levels to address specific problems in a way that regular docs might not think to do.
Even acupuncture or energy healing or some other complementary medical practice might be helpful at this point to tap into new healing for your body. Not sure how you feel about any of that but it sounds like you've got the gluten-free basics down so I was trying to think of other ideas.

Chakra2

Chakra2, thanks for the advice! About the soy and corn, I have cut both of those out of my diet as well, I just wasn't very specific in my list. The corn I was counting in the grain column and the soy in the legume column - so yeah, they are a problem for me too.

About the natural healing, I actually am working with a Natural Practitioner who specializes in herbs. She has probably been the only thing that has really help me with all this (other than all stuff I have learned on this board that is ;) ). She helped me a lot with figuring out some of the things I can't eat right now and has helped me with supplementing my nutritional deficiencies. She can't order blood work for some reason or another, but she helped a bit with ideas of what I can ask my other docs to test for - that is if they would cooperate :rolleyes: . She has mentioned possibly trying acupuncture and would also like me to have some acupressure done, but I live about 5 hours from where she is and she doesn't know of anyone that is reputable in my area. Since you mention it too though, I think maybe I should try to track someone down who would be good. Money may be a bit of an issue too - I don't know how much that stuff usually costs (my husband is a full time college student and with three little ones money is pretty scarce these days). I'll definitely be looking into it more though.

Again - thank you so much. It's an encouragement just to have someone take a little interest. :)

~Sarah
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#8 gary'sgirl

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Posted 23 August 2010 - 07:58 PM

My biopsy is next Tuesday.....waiting patiently......I think the neuro crap can take a long time to heal. I just want to know what's wrong with me (as I know you do for yourself as well)
Keep us posted!!!

ada

You should come back here and post how it goes so I can hear. Hope you get some answers soon!

~Sarah
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#9 gary'sgirl

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Posted 23 August 2010 - 08:07 PM

I took six months to feel any better. I had a colonoscopy and was found to have microscopic colitis (inflammation of large intestine). There is not much I can do about it, though it does tend to go into remittance of its own accord. Rather than giving up all those foods, you might a) find out if your gluten antibody levels have decreased B) see if it is worth testing for microscopic colitis, quite common in celiacs. At least now I know what I am dealing with.

Hey Streetlegal, the colitis is one thing I haven't looked into very much. What made you or your doc think of it? I'll have to check it out.

I would have my antibody levels checked, but I'm just not sure if it would really work very well because I only had the biopsy and didn't have any blood work so there isn't really a reference point. Not long after I had the biopsy and learned more about this disease I did wish that the doctor had ordered both so that we could go back and check that out. I don't know why he didn't and at the time I thought within a couple of months I would be doing better than I ever have - naive - I know, but I didn't know anything about Celiac before.

Do you think it could still be beneficial for me to get the blood tests?

Thanks!
~Sarah
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#10 Streetlegal

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Posted 23 August 2010 - 08:57 PM

Well, I am not an expert as I am pretty newly-diagnosed myself. The advantage of having my blood levels taken was that, as you suggest, I could get a measure of my improvement. It also indicated to me that I was basically getting my diet right (even though I tend to eat out a lot). This is useful knowledge.

As my sickness continued after a few months, and with my antibodies lowered, I guessed something else might well be going on. My nutritionist advised keeping a food diary, but this was a waste of time--there was no respite from my diarrhea, and it would have been impossible to pinpoint any particular food. My consultant suggested the colonoscopy as there is a fairly strong correlation between celiacs and micro colitis. Once found positive, at least I knew what was going on. I was able to take pepto bismol to calm myself, and after a month or so, started to turn around for the better.
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#11 gary'sgirl

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Posted 23 August 2010 - 09:46 PM

Well, I am not an expert as I am pretty newly-diagnosed myself. The advantage of having my blood levels taken was that, as you suggest, I could get a measure of my improvement. It also indicated to me that I was basically getting my diet right (even though I tend to eat out a lot). This is useful knowledge.

As my sickness continued after a few months, and with my antibodies lowered, I guessed something else might well be going on. My nutritionist advised keeping a food diary, but this was a waste of time--there was no respite from my diarrhea, and it would have been impossible to pinpoint any particular food. My consultant suggested the colonoscopy as there is a fairly strong correlation between celiacs and micro colitis. Once found positive, at least I knew what was going on. I was able to take pepto bismol to calm myself, and after a month or so, started to turn around for the better.

Thanks for the reply Streetlegal. What were your symptoms (other than D, of course) for having micro colitis and what do you do to treat it? If you aren't comfortable responding don't worry about it... I'm just curious to know if I'm having symptoms of this as well. I'll be looking it up some time, I think I actually looked it up before, I just don't remember if I thought my symptoms fit. I don't tend to have D, but usually go the other direction quite severely.

~Sarah
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#12 Streetlegal

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Posted 23 August 2010 - 10:05 PM

My symptoms = constant diarrhea, urgency. No constipation . . .
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#13 gf_soph

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Posted 23 August 2010 - 10:11 PM

Yikes, that is a long list. I do sympathise, as I have had to cut out a lof of the same things. I'm a vegetarian, and over time I had to stop eating all legumes and pulses, onion, garlic, broccoli and all similar veggies, most fruit, with the worst reactions from grapes, citrus and apples, artificial sweeteners, fatty foods, spicy foods, and alcohol, on and of with eggs, most nuts etc etc. I noticed a few similarities in our lists, so I thought you may be interested in what I have done. Warning - it's long!

I waited until about 6mths gluten free before looking in to why I was still unwell. I still had lots of gastric problems (D and pain so bad I would end up crying, bile and undigested food going through, stomach clamped up, no appetite, reflux), also lots of BAD brain fog, moody and apathetic, couldn't keep iron or B12 levels up even with injections. I got lots of tingling in my hands, I was clumsy and would drop things, was so exhausted I couldn't walk round the block. There were other problems, but that was the main issues.

The basic summary of the last 10 months is - went to dietician, tried 2 diets with no real improvement. She then sent me to an immunologist as my reaction to chicken sounded allergic (tingling lips and mouth, had never eating it before as am a vegetarian, dietician wanted me to cut out soy so had to try meat), found no food allergies, he thought I had insulin resistance because of the exxhaustion after eating. They started me on medication for that, made me way worse, turned out the glucose tolerance test showed only the slightest problem with insulin.

Stopped that medication, went to gastroenterologist who suspected crohns. Had endoscopy and colonoscopy done, found polyp but nothing else. He labelled me IBS and wanted me to take low dose antidepressants. sigh.

Went back to dietician, tried original diet but kept in tofu and wasn't made to eat meat again (RPA elimination diet, common in Australia but not so much outside). Found out by trial and error that I also react badly to eggs (tingling lips, bad headaches, dizziness and brain fog, followed by D next day) and rice (mood and concentration, supresses appetite).

After a full 2 months on the strict elimination diet I woke up one day and felt healthy and normal. All I was eating at the time was tofu, ricotta, milk, pears, celery, potato, small amount of chives, sustagen and one type of milk based sweet. I know that's not a classic eliminatino diet, and certainly no good for people with milk/soy problems, but this diet looks at groups of chemicals, rather than specific foods.

For 5 days last week I had enough concentration to make it through a full day or work, come home and get stuff done, and end the day laughing and joking instead of curled up on the couch. My personality is back, along with my hunger - i wake up starving, which I haven't done for years! My digestion worked fine unless I ate too much fat. I was walking the dog twice a day without it feeling like an effort. It felt like a miracle. I had no idea I would feel that good again

I started food challenges (for salicylate chemicals) and after 3 days I was pathetic. I was increadibly irritable, the brain fog was back, I cried for nothing, my stomach wasn't working so well, I just hated every moment of being awake. I also got some lip tingling after eating the challenge foods, had some tingling in hands, and am more clumsy and forgetful. So, I reacted to them!

So, long story short, I have some neurological type reactions to food chemicals. It sounds like you are on a pretty restricted diet anyway, but have you been doing it in a systematic way by keeping a food and symptom diary and systematically reintroducing everything? Have you heard of the food chemicals salicylates, amines and glutamates? On the diet they also get you to cut out all preservatives and most colourings.

Also, from what I have heard here, neurological problems seem to take longer to see improvements than other types of sytmpoms, so there is that to keep in mind too.

Hope I haven't gone on too much! I am a bit foggy today after the food challenge over the weekend. Just thought there might be something in there of interest - I'm almost 2 years gluten-free and only recently had real hope of an answer with this diet, so I do know how it feels.
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#14 dilettantesteph

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Posted 24 August 2010 - 07:09 AM

I am very sensitive to trace gluten. For seafood, I go to the counter and ask them to get me stuff directly out of a new package with new gloves. Then I wash it with soap when I get home. When I got it the normal way I got sick. I imagine someone handled it after handling something breaded. For meat, I buy big pieces, like $50 worth. Wash and cut up and freeze. Maybe when they cut it up they don't clean well enough after doing something containing gluten. Fruit I peel. Even peaches can seem to get me if I don't peel. I think raisins just got me. Can't peel those. So much for raisins. Mushrooms seemed to get me. They seem to be grown on straw. Don't eat those anymore. Tomatoes do except for ones grown in my garden, and ones grown from places where they told me that they don't use any coatings. I try to add new foods carefully one per week so I can tell what bothers me. Grains I buy whole and sort, wash and dry. I have found grains that don't belong, that look like wheat. Same with dried beans. It is a big pain to eat this way, but much better than feeling poop running down your leg as you race to the bathroom!
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#15 gary'sgirl

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Posted 24 August 2010 - 06:32 PM

gf_soph, no worries about the post being long. I really appreciate you (and all the others :)) taking the time to share your story and knowledge with me. I haven't heard specifically about the chemicals in specific foods before.

Is it chemicals that occur naturally in the foods or is it pesticides or some such thing? My sister has multiple chemical syndrome, so I am aware very much of environmental chemicals and I know that I react badly to most. I try to eat as organic as possible, but I get the impression that you are talking more about naturally occurring chemicals.

Sarah
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