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10 Months Gluten Free And Still Not Recovered


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#16 gary'sgirl

 
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Posted 24 August 2010 - 06:51 PM

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!

Dilettaantesteph, yeah... any measures to enshure no poop will be running down the leg is worth it! :D

Thanks for sharing. I think that my kids and I may be aomw of those who are supper sensitive to trace gluten as well. That being said, what do you think of the possibility of getting gluten from old carpet and couches/apolstery that had gluten being dropped and spilled on it for years prior to the gluten free life? I really think that my kids - and I as well, possibly - are reacting to things like this. My kids are all very young and if they are eating something and drop it they most often will pick it up again and continue eating it. I try to throw it away when I notice, but you know how that goes. ;)

Something funny about the whole couch and gluten thing: My husband was just talking to his mom the other day and mentioned that we thought we may need to get rid of our old couches because it was the only thing we could think of that could be contaminating the kids. His mom replied "well, it's not like they are licking the couches." While he was telling me this over dinner we looked into the living room and our daughter was licking the arm of the couch! :lol: I busted up laughing! Ahhh! The irony of it all...

On a different note... If you don't mind, I may have to pick your brain from time to time about lurking gluten.

Thanks again!
Sarah
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#17 notme!

 
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Posted 24 August 2010 - 07:43 PM

LOLOL on the couch licking - yeah, kids sure level the playing ground :D I wash my hand 100 times a day with my grandkids living here and my most recited reprimand? 'get that out of your mouth!' or 'dont eat that!' haha - 'get down off there!' runs a close second :)
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#18 dilettantesteph

 
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Posted 25 August 2010 - 10:32 AM

My son, pre celiac diagnosis once dropped the chocolate part of an ice cream bar on the floor and promptly went down there with tongue out.

I think that couches and carpet could be a problem. Maybe you could just get the carpets cleaned (make sure the cleaner is gluten free) and the couch recovered rather than going all new. There are all sorts of other things too. It is a pain figuring them all out. We are still at it after 3 years. Best wishes.
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#19 lucia

 
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Posted 25 August 2010 - 10:52 AM

I don't think my neuropathic pain would be gone (at 5 months) without acupuncture. What has helped me most has been 1) acupuncture, and 2) the SIBO diet that eliminates all grains and artificial sugars (I react strongly with neuropathic pain to corn).

Unfortunately, acupuncture is not covered by health insurance (unless you live in CA), and it is costly for that reason.

I'm so sorry you've had such a rough time. I do hope you can find some relief.
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#20 gary'sgirl

 
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Posted 25 August 2010 - 03:04 PM

LOLOL on the couch licking - yeah, kids sure level the playing ground :D I wash my hand 100 times a day with my grandkids living here and my most recited reprimand? 'get that out of your mouth!' or 'dont eat that!' haha - 'get down off there!' runs a close second :)

Those are all things I'm saying often too! Especially my one year old hears those phrases, but he doesn't listen much. :)
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#21 gary'sgirl

 
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Posted 25 August 2010 - 03:12 PM

My son, pre celiac diagnosis once dropped the chocolate part of an ice cream bar on the floor and promptly went down there with tongue out.

I think that couches and carpet could be a problem. Maybe you could just get the carpets cleaned (make sure the cleaner is gluten free) and the couch recovered rather than going all new. There are all sorts of other things too. It is a pain figuring them all out. We are still at it after 3 years. Best wishes.

We are moving into a new apartment in a couple of weeks and the carpets are supposed to be cleaned really well, so in the hopes of keeping the new place as free of gluten as possible we thought we better not move the contaminated couches in. It's a good idea to get them recovered rather than new, except ours happen to be very old and I don't think it would be worth recovering. We will probably do without any couch until we can save the money to buy something cheep - maybe one of those blow up couches or something ;) :P .
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#22 gary'sgirl

 
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Posted 25 August 2010 - 03:16 PM

I don't think my neuropathic pain would be gone (at 5 months) without acupuncture. What has helped me most has been 1) acupuncture, and 2) the SIBO diet that eliminates all grains and artificial sugars (I react strongly with neuropathic pain to corn).

Unfortunately, acupuncture is not covered by health insurance (unless you live in CA), and it is costly for that reason.

I'm so sorry you've had such a rough time. I do hope you can find some relief.

Lucia, I replied to your thread about the SIBO diet. I really think that could be the next thing I need to do. If you have any info you could share about how to go about the diet I would really appreciate it.

I also think that the acupuncture would be a good thing to try. I just may need to save up for it at this point.
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#23 Korwyn

 
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Posted 25 August 2010 - 05:48 PM

My neuro symptoms are triggered almost completely by soy. This developed after my celiac disease became fully engaged so I went through the same searching you did as I thought I was somehow getting CC all the time or missing some gluten in the house. I cannot tolerate soy in any amount in any form. Soy lecithin is in chocolate, tea, flavorings, many of the brands of nut milks, and lots of other things. Soy protein and flour is a common flour substitute in gluten-free baking.
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Undiagnosed for 20 years since first symptoms.
March 2009 - Negative Blood work
April 24, 2009 - Gluten-free
April 29, 2009 - Notably positive response to gluten-free Diet.
May 2, 2009 Dairy Free
May 6, 2009, Soy Free
May 27, 2009 Enterolab Results: Positive Anti-gliadin IgA, tTG IgA, Casein, HLA DQ2.2, HLA DQ8
June 4, 2009 Refined sugar free (except Raw Honey, pure Maple syrup)
June 29, 2009, Dad diagnosed Celiac by GI specialist via blood work and dietary response.
July 2009, Dad's gene test: double DQ8! Thanks Dad - I'll try to get you something nice for Christmas! :)
August 8, 2009 Really Soy free this time - Thanks Blue Diamond for the soy lecithin in the almond milk! :(

#24 SheriB

 
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Posted 25 August 2010 - 09:14 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.



The only reason they finally discovered my Celiac is because I had a HUGE iron deficiency. I don't know what your main illness issues are, but I was so tired all the time that I would literally fall asleep anywhere at anytime...even driving. I am some better now after two months, but not even close to "normal". I don't think my intolerance is quite as touchy, but I was told to allow NO WHEAT, BARLEY, OR RYE into my diet...and I think I am pretty conscientious. Also, the labels on food are really sketchy. They are required to list if WHEAT is in the ingredients in ANY FORM, but not barley and rye. So if you don't know all the aliases for barley and rye, you could be getting gluten when you don't even know it. I am finding this easier to deal with than I thought...but still very limiting. Good luck.
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#25 gary'sgirl

 
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Posted 26 August 2010 - 07:40 PM

My neuro symptoms are triggered almost completely by soy. This developed after my celiac disease became fully engaged so I went through the same searching you did as I thought I was somehow getting CC all the time or missing some gluten in the house. I cannot tolerate soy in any amount in any form. Soy lecithin is in chocolate, tea, flavorings, many of the brands of nut milks, and lots of other things. Soy protein and flour is a common flour substitute in gluten-free baking.

Thanks for sharing Korwyn. I will have to recheck all of my cleaning products etc... for soy. I know that I am not getting it in food because I have not been eating any packaged products at all for several months, but I can't remember if I remembered to check all other products. I know that most of what I use is soy free, but now I am second guessing myself on a few things. Thanks for bringing it to mind. It would be crazy if there was just one thing I hadn't thought of yet that was causing all this agony. :unsure:
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#26 gary'sgirl

 
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Posted 26 August 2010 - 07:45 PM

The only reason they finally discovered my Celiac is because I had a HUGE iron deficiency. I don't know what your main illness issues are, but I was so tired all the time that I would literally fall asleep anywhere at anytime...even driving. I am some better now after two months, but not even close to "normal". I don't think my intolerance is quite as touchy, but I was told to allow NO WHEAT, BARLEY, OR RYE into my diet...and I think I am pretty conscientious. Also, the labels on food are really sketchy. They are required to list if WHEAT is in the ingredients in ANY FORM, but not barley and rye. So if you don't know all the aliases for barley and rye, you could be getting gluten when you don't even know it. I am finding this easier to deal with than I thought...but still very limiting. Good luck.

SheriB, you know, the iron thing could be a bit of the problem. Iron was one of the things that the docs didn't test for. It seems like something that would be pretty standard to test for in my thinking.

I think I'm going to go to a general practitioner and see if they will do some of these tests that I couldn't get the specialists to do - a GP seems to often be a little more willing to work with the patient.
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#27 keshav

 
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Posted 28 August 2010 - 11:47 AM

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?

Hi, I have been on gluten free diet for last 2 yrs and my ttg IgA is just increasing...there is improvement in terms of symptoms like wt gain but i have also got high TSH (normal T3 and T4 as of now)...No RA, Diabetics...so I am still wondering wat is causing rise in ttg...have also started a new threat for d same and have mentioned detailed blood work...overall, 2 yrs but yet to recover in terms of antibodies count :(
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#28 ToriMartin

 
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Posted 29 August 2010 - 07:26 AM

hi Garys girl,
Wish I could be of help but I'm like you, playing the waiting game.
I've had the brainfog for 12 yrs now. For me that is the hardest part. I don't think I'd be so tired all the time if it weren't for that. But, going gluten-free, milk free & corn free has given me hope. I'm not as depressed because I feel like I finally found what's wrong... The wait is hard though... It's been 2 months, proud of myself... I think one of the hardest parts is feeling awful & no one understands. My husband doesn't get it. I keep busy I think mostly because I feel like if I sit & relax, I won't want to get up again. Anyhow, just wanted to let you know I know how you feel :)

Oh, btw, I found that taking Folic Acid makes me break out... Not sure why... I read on others replies on having high Folic Acid... Is that without taking vitamins?
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#29 gary'sgirl

 
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Posted 29 August 2010 - 09:07 AM

Hi, I have been on gluten free diet for last 2 yrs and my ttg IgA is just increasing...there is improvement in terms of symptoms like wt gain but i have also got high TSH (normal T3 and T4 as of now)...No RA, Diabetics...so I am still wondering wat is causing rise in ttg...have also started a new threat for d same and have mentioned detailed blood work...overall, 2 yrs but yet to recover in terms of antibodies count :(

Hi Keshav, I am sorry to hear that your numbers are rising even though you have been on a gluten free diet. I went to the thread you started and read it, I don't have enough experience to know what all of the test result mean, but keep pursuing it.

So are you still having symptoms? It would seem that if something is wrong you would be displaying symptoms of some sort. I wasn't sure from your post if you completely recovered after going gluten free or if some of the symptoms did not resolve.

If you still are having symptoms, what are they?

When I went off of gluten I only noticed a very little improvement at first and withing a couple of months I was feeling even worse and I have not gotten any better since (it has almost been 11 months that I have been off of gluten).

I have been reading a lot about SIBO and treating it with the specific carbohydrate diet and I think that is the next step I am going to take.

Please let me know if you figure anything out. I hope you do soon.

~Sarah
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#30 gary'sgirl

 
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Posted 29 August 2010 - 09:48 AM

hi Garys girl,
Wish I could be of help but I'm like you, playing the waiting game.
I've had the brainfog for 12 yrs now. For me that is the hardest part. I don't think I'd be so tired all the time if it weren't for that. But, going gluten-free, milk free & corn free has given me hope. I'm not as depressed because I feel like I finally found what's wrong... The wait is hard though... It's been 2 months, proud of myself... I think one of the hardest parts is feeling awful & no one understands. My husband doesn't get it. I keep busy I think mostly because I feel like if I sit & relax, I won't want to get up again. Anyhow, just wanted to let you know I know how you feel :)

Oh, btw, I found that taking Folic Acid makes me break out... Not sure why... I read on others replies on having high Folic Acid... Is that without taking vitamins?

Tori, I totally hear you on the not being understood part - it leave us feeling really alone, not only are we sick, but people act like it is no big deal. It's hard, really hard. One thing that helps me is to remember that I don't want others to experience this and unless they do they really can't understand what it is like to be alive, but feel like you may never get to truly live again. I often wish that I had a friend that would just be there for me, but everybody else just keeps living their life and I feel like I'm on the sidelines - just watching and wishing that I could join.

One thing that I have realized form my experience is that people who have chronic illness really need people to just be there and support them - just be a friend. I hope that I don't forget that when I start feeling better, because if I know anyone else going through something like this I don't want them to feel alone.

Oh, sorry, I didn't mean to ramble on about all that stuff :P . I just wanted to tell you I know how it feels to feel alone and the struggles that come with it.

About the folic acid thing - I was just taking a multi vitamin, so I was not take any more than I should have. My doctor check my levels of it and they were really high. She said that high level pretty much always mean a bacterial overgrowth problem. Which I am sure that i have because I keep getting reacurring yeast infections. I never connected it but a little while before I knew that i had bacterial problems I started breaking out and I hadn't really had a problem with that for years. Interesting... I wonder if some how high levels of folic acid are realated to that.

As I mentioned to a previous poster, I think I am going to try the specific carbohydrate diet. It sounds like something that could really help with my situation.

Oh yeah, I was wondering if you have had any improvement since going gluten free.

I really hope you get better soon!

~Sarah
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