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Very Frustrated


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#1 Coolclimates

 
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Posted 13 May 2011 - 07:22 PM

Last May, I was diagnosed with Celiac disease. Since then, I've been on a strict gluten-free diet. I have seen many doctors, about 5 of who confirm that I definitely have celiac disease. The problem is, I just got my antibodies retested last month and I'm still very elevated and sick. Now I have atypical celiac disease, the kind without GI symptoms (except for acid reflux which has improved a lot). I mainly just feel really fatigued and have a lot of sleep problems, as well as a string of other symptoms. I also don't get any instant reaction if I'm glutened. Which is good in some ways and bad in others. Instead, I seem to have a very delayed reaction and I'm still not sure what exactly the reaction is. I've been feeling tired a lot more lately and have lost weight again, so I went to the University of Chicago Celiac Center and got retested. Sure enough, the results were not good:
TgG IgA 44 (20 or less is normal)
glaiden gluten protein 79 (20 or less is normal)
IgG Normal (but this has always been normal)

Since this is the first time I got tested at this facility, they cannot compare my latest results with the past 2 tests which I got done different places with different scales.

I never cheat and have tried very hard at this diet. But I'm beginning to think that I must be continuing to ingest gluten from somewhere. I'm looking into all my medications and have been advised not to eat out at all or eat anyone else's cooking, even if it's gluten-free. I also have been advised to avoid so called gluten-free products that state that they were made in the same facility as wheat.

The doctors highly doubt that I have lactose problems because I do not have GI problems. I'm beginning to wonder if I have non responsive or refractory celiac disease. Or if I'm just extremely sensitive. Without getting a reaction each time I accidentally ingest gluten, I have no idea whether I'm continuing to poison myself. I'm frustrated and discouraged.
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#2 a1956chill

 
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Posted 14 May 2011 - 03:42 AM

Last May, I was diagnosed with Celiac disease. Since then, I've been on a strict gluten-free diet. I have seen many doctors, about 5 of who confirm that I definitely have celiac disease. The problem is, I just got my antibodies retested last month and I'm still very elevated and sick. Now I have atypical celiac disease, the kind without GI symptoms (except for acid reflux which has improved a lot). I mainly just feel really fatigued and have a lot of sleep problems, as well as a string of other symptoms. I also don't get any instant reaction if I'm glutened. Which is good in some ways and bad in others. Instead, I seem to have a very delayed reaction and I'm still not sure what exactly the reaction is. I've been feeling tired a lot more lately and have lost weight again, so I went to the University of Chicago Celiac Center and got retested. Sure enough, the results were not good:
TgG IgA 44 (20 or less is normal)
glaiden gluten protein 79 (20 or less is normal)
IgG Normal (but this has always been normal)

Since this is the first time I got tested at this facility, they cannot compare my latest results with the past 2 tests which I got done different places with different scales.

I never cheat and have tried very hard at this diet. But I'm beginning to think that I must be continuing to ingest gluten from somewhere. I'm looking into all my medications and have been advised not to eat out at all or eat anyone else's cooking, even if it's gluten-free. I also have been advised to avoid so called gluten-free products that state that they were made in the same facility as wheat.

The doctors highly doubt that I have lactose problems because I do not have GI problems. I'm beginning to wonder if I have non responsive or refractory celiac disease. Or if I'm just extremely sensitive. Without getting a reaction each time I accidentally ingest gluten, I have no idea whether I'm continuing to poison myself. I'm frustrated and discouraged.

If you are super sensitive avoiding gluten free mixes and pre-made gluten free products entirely may be your best option .Even though "gluten free" those product can have a low measure of gluten. :huh: Sticking with just whole food for awhile may help.
Hope you find the culprit soon.
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Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
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Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

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Gilbert's Syndrome , confirmed by gene testing


#3 dilettantesteph

 
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Posted 14 May 2011 - 04:37 AM

I agree with the previous poster. It would be a good idea to eat only produce and meat for awhile and see if that helps. Not eating "gluten-free" items made in shared facilities might not be enough. They might mot be getting clean enough starting materials. There is a lot of potential for cc at the farming, harvesting, and shipping levels.

You may be a super sensitive celiac. I think that even some pesticides might give me a reaction. I need to wash and peel carefully and be careful about how my unpeelable items are treated.

I wouldn't go thinking that you have refractory celiac until you try a lot more dietary restrictions.
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#4 mommida

 
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Posted 14 May 2011 - 04:54 AM

Have you gone through and checked all your hygiene products? I was glutened by lipgloss, and a cookie crumb kiss.

Don't ask me how I was feeling weak and tired for a while, rechecked everything and found barley in the deodorant. I assure you I don't eat deodorant nor lick armpits, but was still affected.

Wheat free doesn't mean gluten free. Health food stores put spelt in the "wheat free" area. As you know, spelt has gluten.

Keep a food journal. If you are having other sensitivities/intolerances/allergies you can track them down quicker.
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#5 T.H.

 
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Posted 14 May 2011 - 09:01 AM

I never cheat and have tried very hard at this diet. But I'm beginning to think that I must be continuing to ingest gluten from somewhere. I'm looking into all my medications and have been advised not to eat out at all or eat anyone else's cooking, even if it's gluten-free. I also have been advised to avoid so called gluten-free products that state that they were made in the same facility as wheat.

The doctors highly doubt that I have lactose problems because I do not have GI problems. I'm beginning to wonder if I have non responsive or refractory celiac disease. Or if I'm just extremely sensitive.


So sorry you are feeling so sick and disheartened! A lot of us here can sympathize, i think - it's so, so upsetting when you are gluten free and that's just not cutting it. Hopefully some folks here could help you out. :)

Could you give a list of a couple typical days' worth of food? Maybe there's something some of us might have heard of as an issue. Where do you work? Does it involve anything with food prep or construction? Both of those areas have a lot of airborne gluten that can really mess a celiac up. What products do you use for your body, spouse and kids' bodies, pets?




I don't get gut symptoms from gluten, either - didn't get any at all, really, except for periodic constipation. Turns out that I have celic disease, intolerances, AND food allergies. Once I eliminated them all, now I have gut problems with dairy and such. Weird, because when I was eating it all the time, it was like everything was so screwed up anyway, I never noticed any trouble. So at least I'm one example of someone with dairy issues who didn't have gut problems at first.

From my experience:
- mild food allergies may not give you hives, or show up on allergy tests accurately (this according to my allergist, mind you), but they can cause inflammation in the gut, other bodily issues, and impede healing significantly.
- food journals are a big key to better healthy when you are struggling to find out what's getting you. It's the only way I found some of my problems. And it can help a lot when you have delayed symptoms, because that can still be a pattern, if you are seeing it, say, every time you eat a certain brand of rice or something.
- Do you eat gluten-free oats? About 10-15% of celiacs have ASE - avenin sensitive enteropathy. This means, basically, that we can't have oats at all, even gluten-free ones, or we react pretty much like we do to wheat. Not only is this an issue for oats themselves, but many gluten-free facilities do not have any practices in place to prevent cross-contamination from gluten-free oats, so you can get sick from them. Bob's red mill is one that many oat sensitive celiacs don't do well with because gluten-free oats are processed in the facility, and Lundberg rice grows oats as a cover crop and can be a problem as well. Many gluten-free products can be an issue for this reason.
- If you are really sensitive, you might not heal on a normal, very strict gluten-free diet. I have super sensitivity, too, and I've had to call up companies and really grill them to hunt for safe food. As an example? There are gluten-free facilities that do not test the food coming out of the facility for gluten, and there are some that do. There are gluten-free companies that test their food down to 20ppm of gluten, some that test to 10ppm, and some that test to 5ppm. So we could eat 4 slices of bread from one gluten-free company and get as much gluten as 1 slice of bread from another, even though both are made in a gluten-free facility. It might not matter much to someone who is not as sensitive, but for one who is, this can make a HUGE difference.
- Are you in a shared household or a gluten free household?
- When checking your meds and vitamins, you'll want to ask two questions: are they gluten free AND do they test for gluten. It's surprising how many answer yes to the first, but no to the second. I guess they simply know the gluten levels through a vulcan mind meld or something, sigh. <_<


- if you are REALLY sensitive, there are going to be some extreme measures you have to take to stay safe. There's a few of us who are in that boat here in the group, so if you hit the point that you want to try, we'd all be happy to help, I imagine. But probably better to not go that extreme if you don't have to, eh?


Oh! And one last thing. I don't know if this is something you would want to do, but this is what helped me - I fasted for a couple days. Not on purpose - I thought I had the stomach flu or something and didn't want to eat. But with no food, I started feeling SO much better. And on trying new foods, the reaction was much more noticeable, so I was able to suss out bad foods quicker, I think, than if I'd just slowly been eliminating foods one by one to check on them. I found foods I had allergies to that were later confirmed with blood work, plus a few that were bad that we had no idea about. It took a while to get to a safe diet, but while hungry, I was still feeling better than I had been! :-)


Good luck to you.

Shauna
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

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Father, brother: celiac positive


#6 Coolclimates

 
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Posted 14 May 2011 - 10:27 AM

thanks so much, everyone, for your support and suggestions. I will be back again soon.
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#7 taysic

 
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Posted 21 May 2011 - 07:22 PM

You should look into taking digestive enzymes to break down the gluten that is already in your gut. And also I use Triphala and it works wonders at cleansing the gut.

Also - your tiredness might be coming from a thyroid condition because folks with gluten sensitivity often have a weakened thyroid because this is an autoimmune disorder.
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#8 kareng

 
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Posted 21 May 2011 - 08:28 PM

You should look into taking digestive enzymes to break down the gluten that is already in your gut. And also I use Triphala and it works wonders at cleansing the gut.

Also - your tiredness might be coming from a thyroid condition because folks with gluten sensitivity often have a weakened thyroid because this is an autoimmune disorder.


I don't think gluten just stays in your " gut" and can be broken down. If you are gluten free or even if you get some accidentally, it doesn't stay, it moves thru.
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#9 shadowicewolf

 
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Posted 21 May 2011 - 09:07 PM

I don't think gluten just stays in your " gut" and can be broken down. If you are gluten free or even if you get some accidentally, it doesn't stay, it moves thru.

and reeks havic in its wake B)
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#10 dilettantesteph

 
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Posted 22 May 2011 - 05:18 AM

I've had problems with supplements. I think that a lot have very low level cc. I'm sensitive to such low levels that for me they do more harm than good.
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#11 taysic

 
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Posted 25 May 2011 - 03:06 PM

I don't think gluten just stays in your " gut" and can be broken down. If you are gluten free or even if you get some accidentally, it doesn't stay, it moves thru.



Actually gluten does stay in your ""gut"". I would link to pages but this site seems to be suspicious of linking. Just do a simple search.

It sticks to the walls of your intestines and also fills in pockets of the villi -- it can last there for a very long time, and rots as it sits there, causing more illness.

Cleansing your gut is imperative.
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#12 Coolclimates

 
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Posted 28 May 2011 - 07:22 PM

Thanks for all of your support. I am just feeling so frustrated right now...I've been checking every medication that I'm taking to see if it's gluten free. So far, all of them are except for 2 which the pharmacist has been trying to find out now for the last few weeks (some of these companies are so bloody uncooperative). I take Citrical Calcium Citrate which is gluten-free. I have discontinued taking any other supplements as I don't trust them. I've also cleaned out my kitchen of all "questionable" items (for instance, items that say they are gluten-free but then say they were manufactured in the same factory as gluten or items that don't say anything about being gluten free). I make sure to use gluten-free toothpaste, lipstick, deoderant, etc. I have gotten my thyroid checked many times but so far it's been normal.
I am just feeling so tired and low on energy. That's my main problem, but I also am having some headaches and sinus/pressure, sleep problems and back pain. I don't know what more I can be doing right now...but there might be things that aren't obvious to me. For instance, I eat at my parent's house a lot. They have pretty much made their kitchen gluten-free, but they have an old wooden knife rack where they have been storing knives for at least 30 years. It just occurred to us that the wood is probably soaked with gluten (when we ate normal bread before I was diagnosed). I also wonder if it lingers in any other pots and pans. I know that wood is bad and so is teflon.
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#13 padma

 
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Posted 29 May 2011 - 05:11 PM

Hi. I was diagnosed 10 years ago. I found I also have other conditions that cause the same symptoms. Here is a site that might give you some extra info: http://aboutmecfs.or...rtGSHIntro.aspx Hope it comes through.
There are so many systems in the body and when one is off balance, then others can become off balance, too.
You are on the right track. It has taken me so much experimentation to find a healthy diet and to regain my health.
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#14 GlutenFreeManna

 
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Posted 29 May 2011 - 06:46 PM

I have gotten my thyroid checked many times but so far it's been normal.


Have you gotten a copy of your records to see what the numbers were? The guidelines for what is considered hypothyroid changed in 2002, however many drs are still not aware of the changes. See here: http://thyroid.about.../a/labs2003.htm
I have also read that some people can get diagnosed with hypothyroid if their tests consistly show a change toward hypo but may still be just under the level considered normal. So get ALL of the test records if you can from every time you had it done so you can see if there is a trend you can point out to your dr. That and your symptoms may be enough to get them to prescribe a low level of TSH hormone.

Also, which thyroid tests they doing? If they are only testing TSH (which is the most common one they run), they may miss something. Make sure they do a full panel testing T3 and T4. This article: http://thyroid.about...tedfriedman.htm explains a little more (although note the ranges are outdated) about why you could have a normal TSH but still have hashimoto's or a case of hypothyroidism.
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#15 mushroom

 
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Posted 29 May 2011 - 06:56 PM

I know this is a pretty basic question, sorry if it has been asked and answered already, but have you had a full nutrient panel done lately? Your symptoms sound like someone whose nutrient levels could be out of whack
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