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jerseyangel

"Super Sensitive" Celiacs.....

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JerseyAngel, thanks! I love it when the solution is to buy a simple, mainstream, available-anywhere product.

Swansong, I too believe the issue is your non-gluten-free house, not the fact that you make sandwiches for your DH (I'm sure you're really careful about washing your hands afterward!).

There's lots of debate on this forum about whether a "mixed" home is possible. But for me (a super-sensitive), I know it wouldn't be possible. I already have enough mystery glutenings, each of which costs me one day in horrible fatigue/headache and several more days of fatigue and bowel issues.

Crumbs get EVERYWHERE, and I know from firm experience that one tiny crumb (like the garlic toast crumb I found in my mouth while eating a restaurant salad a few weeks ago) is enough to cause a major glutening for me (that one lasted about nine days, even though I fished the crumb out of my mouth at the table -- lovely for my dining companion!).

If you're super-sensitive, you could be reacting to crumbs in the silverware drawer, gluten residue on the utensils (even though they *look* clean), gluten on drawer knobs and door knobs ... the list is endless. For me, it wouldn't matter how much and how often I cleaned -- I'd still be sick all the time in a mixed house. So perhaps that's your issue, too.

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I guess I will have to live with it then, because I cannot ask my husband and son to be gluten free. My husband is a diabetic, so his diet is already restrictive.... and he is a major bread lover! Eating a crusty rustic bread is one of his main pleasures in life. When I was first diagnosed, he offered to go gluten free too, but I just could not imagine that my sensitivity would be that extreme.

You are right, crumbs do get everywhere, so I suppose as long as there is gluten in the house, I'm going to have to deal with this.

Thanks for the comments. I'm learning a lot on this FORUM.

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I guess I will have to live with it then, because I cannot ask my husband and son to be gluten free. My husband is a diabetic, so his diet is already restrictive.... and he is a major bread lover! Eating a crusty rustic bread is one of his main pleasures in life. When I was first diagnosed, he offered to go gluten free too, but I just could not imagine that my sensitivity would be that extreme.

You are right, crumbs do get everywhere, so I suppose as long as there is gluten in the house, I'm going to have to deal with this.

Thanks for the comments. I'm learning a lot on this FORUM.

If your husband has offered to live in a gluten free house for while I would take him up on it. You should also make sure that he himself has been tested. There are a lot of diabetics that are also celiac. Some doctors are now routinely testing diabetics for celiac. Your son should also be tested as should all your other first degree relatives.

Having a gluten free house will aid your healing. You need to stop the antibody reaction and that is hard to do when you are constantly being glutened.

There are many recipes that are easily adapted to being gluten free that many of us make already. Most that do have mixed homes restrict the types of gluten that comes in. For example breads and crackers are eaten and prepared in only one area and the gluten eaters need to clean up crumbs and rinse their dishes. Seperate condiments are always needed, plus toaster and colander of course. Usually the use of floury mixes is avioded like making cakes and breads as the dust gets all over.

It can be done but precautions do need to be taken.

When there is a will there is a way as they say. You'll find that way.

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I use Ghirardelli unsweetened cocoa. I think I read here that it is made on separate lines, and it tested negative if you believe in that testing. Plus, it doesn't make me sick.

I also vote for a gluten free house. We tried for a year to learn how to be careful enough. I didn't even touch or clean up gluten and still it didn't work.

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First, I do know that "their" would be the correct spelling in my former post...sigh; I'm tired. Second, I really think you and your husband can come to a happy medium and if he has offered to be gluten-free, HE will benefit as well. (Your happiness?) Kids are trickier BUT, I had two teenagers at home when I kept getting glutened and THEY finally said, "Mom, this is nuts- we'll have a gluten-free house". (I get very miserable and have a good deal of pain which with their infinite teenage wisdom, was difficult to mask.) I take my son out for "real" pizza and they even order "in" sometimes. When gluten comes in, everyone is on "High Alert', meaning, we watch it like hawks, use only certain dishes and vaccuum and clean obsessively afterwards. If we had biohazard suits I suspect we would don them...

If I give a potluck dinner party with my gluten-eating friends, we do the same, although they usually make an effort to bring as "gluten-free" food as they can. It seems to work. For the rest of the time, it is comforting and freeing to know that from the adults to the kids (now just one at home...) to the pets (well, not the rabbit but, that's another story...) there is NO obvious gluten in our house. It just isn't worth it.

You'll figure out what you need to do. There's a long learning curve but, don't be a martyr because NO ONE benefits if Mom isn't well.

Just my two cents...

lisa

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Thanks for the responses on the cocoa -- chocolate coconut ice cream is on the menu this coming weekend!

I had another puzzle: Both my DD and I reacted after eating stir-fried vegetables at my friend's house. The only ingredients were: olive oil, salt, snow pea pods, onion and mushrooms. I trust my friend to cook gluten-free, and his house is almost completely gluten-free anyway (I just need him to switch over to gluten-free soy sauce and I've completely decontaminated the house -- yay!).

So what got us? I have a vague memory that mushrooms can be grown on straw, so that's my top suspect -- has anyone heard that or confirmed it? Also, DD loved the mushrooms and had most of them from the stir-fry, and she reacted much worse than I did (she still had horrible cramps this morning, poor kid). What do you all think?

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I believe my boyfriend is a super sensitive celiac. I'm wondering when you guys have a reaction to things like corn and soy and nuts what kind of symptoms do you have do they resemble being glutened. so far we've narrowed a few things down to rice, nuts, and recently we've cut out dairy (I'm hoping that makes a big change.)

Brian has gotten over alot of his stomach pain, still some nausea, but his dh is , painful, burning, and tearing, are the words he uses to describe it. he can't stand to be in his own skin

Can anyone give me a some advise, or uplifting words

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Getting rid of the dairy until he heals could be a good thing- I was off of it for 2 years and finally able to put it back. Soy gives me a reaction similar to gluten and rice I've never been able to eat cooked traditionally. I can now tolerate Tinkyada pasta for some reason (super processed?) but not every day. Nuts are probably just still too rough on his system. How long has he been gluten-free? And I'm sure you're reading the fine print on all products and foods? For me, I cannot just trust that if something says it's gluten-free that it is; it has to be a dedicated company.

I hope you get to the bottom of this soon! Others will post...

lisa

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Brian has gotten over alot of his stomach pain, still some nausea, but his dh is , painful, burning, and tearing, are the words he uses to describe it. he can't stand to be in his own skin

My DH only kicks up when I am glutened repeatedly, eating gluten every day. Last spring I traced it to the caramel coloring in my coffee syrups. I can still tolerate the ones with no caramel coloring. But I was having those 6 days a week in my coffee & only small amounts. I know...caramel coloring in the US is safe. But I'm not sure these were made in the US. I never got a straight answer from the company. Recently I had a flare up. I believe its the Dutch chocolate I used in my cake. I haven't used it for months. It was an old product from a bulk food store where they buy large quantities and repackage it for sale. They repackage flours and all kinds of things there. I'm sure it's CC'd.

So I would say for the DH, examine what he is eating on a daily basis. It must be "sneaky Gluten" that doesn't show itself upfront to you. Don't assume that because it's "supposed" to be safe that it is. It might be made in a shared facility or made outside the US & only distributed here. It might take some digging on your part to figure it out. If you're unsure about a product, eliminate it for awhile and see what happens. DH heals slowly but he should be able to tell in some way in a month or so.

Good luck in your search.

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Eating soy initially gives me somewhat of a similar gluten reaction. I get really nauseous, get a headache, feel overall icky. BUT, the difference between the two is that a true gluten reaction takes me a week and a half to get over. Once the soy passes through my system, I'm ok. So, it's just a matter of hours. It's a rough few hours, but at least it doesn't last for days.

I don't have DH, so I really can't say that I understand what your bf is going through. I know that iodine can be a real problem for those with DH, so if he doesn't know that already, pass that along. A lot of the info on DH, along with those here with it, suggests seriously limiting/avoiding iodine, especially in the beginning to help the healing process.

This site is full of great information and great people. Hope you find the answers you are looking for to help your bf recover. It takes time, but knowing is half the battle with this disease. Just continue to support him, he will get better.

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Thank you all for you advice, I now believe the big problem has been caramel coloring,

Brian's been gluten free for a year, I just hope that next year is easier.

two more question.

after having a reaction to things like nuts and soy and caramel coloring how long does it take to leave the system.

Brain has had celiac all his life he has been poisoning himself for 24 years. have any of you found that the recovery process takes longer the longer it took to get on the diet?

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Nutribiotic Shampoos, bodywash, skin cleansers, deodorants etc..

Has anyone has a reaction?

I really need a new soap, face cleaner, mouthwash, deodorant, and shampoo. This company makes them all, and is gluten-free, but says not all of their products are/maybe made in dedicated facilities, and I haven't had luck yet in getting a reply as to which of those items are safe and unsafe.

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Thank you all for you advice, I now believe the big problem has been caramel coloring,

Brian's been gluten free for a year, I just hope that next year is easier.

two more question.

after having a reaction to things like nuts and soy and caramel coloring how long does it take to leave the system.

Brain has had celiac all his life he has been poisoning himself for 24 years. have any of you found that the recovery process takes longer the longer it took to get on the diet?

From someone who's been in your shoes, I hope he feels better very soon.

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Brain has had celiac all his life he has been poisoning himself for 24 years. have any of you found that the recovery process takes longer the longer it took to get on the diet?

Well, that's hard to say because so many of us got on the diet only after years and years of poisoning ourselves, too. On the bright side, that means he's no worse off than many of the people here. It seems there isn't a dramatic difference, and its a very individual process. I've been gluten free almost a year and I'm still not healed, and I was diagnosed at age 18 (much younger than many of the people).

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I am so sensitive to gluten AND millet that I completely stop menstruating when I eat it. I think it's absolutely nuts. The worst part is that scientists have not yet figured out how celiac leads to amennorhea. I personally find it quite fascinating that it can totally mess up my system this way.

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I belong here too-- thanks for the thread!

gluten-free, dairy free, no nitrates (or -ites), no sulfites (or -ates), no msg and now no pistachios and multiple medicine sensitivities. I have DH and get lots of topical reactions to toiletries.

I too went undiagnosed for many years (definitely over 20, maybe as many as 30+).

I read that it can take up to 5 years to recover completely from celiac disease. Do you all think that perhaps there is an initial period of supersensitivity that will gradually subside? Or do you think this is as good as it gets for us?

The other day I moved an old toaster. One of my hands slipped into one of the slots. Even though I washed my hands twice with soap and water afterwards, I got glutened. I mean to say that I got sick (D) about 8 times about an hour later. I got a headache. I don't know how-- manybe some got under my nails or maybe I breathed some in. Maybe some crumbs fell on my clothes and later found their way into what I ate. But I must say, it seems extreme to get this sick from just moving a toaster! I guess I have to treat the stuff like plutonioum.

Sometimes I feel hopeless-- like I am going to end up like the kids in those bubbles.

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I read that it can take up to 5 years to recover completely from celiac disease. Do you all think that perhaps there is an initial period of supersensitivity that will gradually subside? Or do you think this is as good as it gets for us?

I think the answer is different for everyone. I can tell within minutes if I've eaten gluten or soy, but what my body does with it has gotten much less dramatic. You might find that your responses get less over time. All you can do is keep gluten-free and hope for the best.

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Thank you Jestgar. I will try to muster up some hope. It is nice to get a little reassurance from people who have been there too.

You know, I would like to second Mike M's plug for domata flour. I have been experimenting with Jule's (aka nearly normal), Better Batter and domata and I must say that for me domata wins hands down.

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So I took a little road trip this weekend and had some time to think about fast food. I only eat Chick-Fil-A fries when I'm on the road but have seen quite a bit about Five Guys fries. Has anyone had any issues with them? What other things do you trust at fast food joints? We don't eat chicken, beef or pork so that always limits us a bit.

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Just so everyone here knows, the rant I posted here yesterday was actually split off into another topic and not deleted as a couple people who PMd me thought that it had been. For anyone who wants to find it it was put in the Board/Forum Technical Help area - or follow this link - (removed by Nancy)

Update - I PMd Scott earlier today and he PMd me letting me know that he had removed the thread containing my vent and the susequent fallout and drama. I agreed that that needed to be done because it turned into way more than I ever thought or intended. I just wanted to take the link to the new thread that was created that I put here earlier and make sure it was taken down from this post.

I was thinking about just deleting this post, but I didn't want anyone to think that someone deleted it without my knowledge.

Nancy

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I had another puzzle: Both my DD and I reacted after eating stir-fried vegetables at my friend's house. The only ingredients were: olive oil, salt, snow pea pods, onion and mushrooms. I trust my friend to cook gluten-free, and his house is almost completely gluten-free anyway (I just need him to switch over to gluten-free soy sauce and I've completely decontaminated the house -- yay!).

So what got us? I have a vague memory that mushrooms can be grown on straw, so that's my top suspect -- has anyone heard that or confirmed it? Also, DD loved the mushrooms and had most of them from the stir-fry, and she reacted much worse than I did (she still had horrible cramps this morning, poor kid). What do you all think?

Could it be the pan that it was cooked in? Teflon? or some other finish that can't be scrubbed hard to clean or that gets a sort of permanent coating on it that comes from the foods that are cooked in it?

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So I took a little road trip this weekend and had some time to think about fast food. I only eat Chick-Fil-A fries when I'm on the road but have seen quite a bit about Five Guys fries. Has anyone had any issues with them? What other things do you trust at fast food joints? We don't eat chicken, beef or pork so that always limits us a bit.

I ate at Five Guys since gluten-free, but it was probably a year ago. I got their fries without the seasoning, because I wasn't sure about it, and I'm not really crazy about it. And I got a hamburger. I don't recall feeling bad, but like I said it was about a year ago, and before I was so strict and payed a lot of attention. I don't think they serve anything else there fried (like nuggets or anything) but I could be wrong.

I'm not sure this actually will help you in any way... LOL :lol: But I thought I would share my experience.

I don't do a lot of fast food, as most of us don't, on the road we usually go to Wendy's because their chili doesn't bother me. Some have dedicated fryers, some don't. And it's usually one of the only places we can find in our travels that I'm able to find anything at all to eat. That wouldn't help you though... I don't do salads because I can rarely eat any of the dressings (eggs, dairy, soy...) and most of their salads aren't good enough on their own.

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Any recommendations for CC safe almond meal and coconut flour?

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Any recommendations for CC safe almond meal and coconut flour?

I can't help you with the Almond meal (that one I'm allergic to) I use Peter and Paul Coconut flour/fiber. It is certified organic and I buy it at our local health food store. Here is a customer service number off of the bag (905) 768-1152 or (905) 768-3251 I don't react to it and it also tested negative with the EZ gluten test strip (I trust these tests when done under the right conditions) All the best, Mike

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Thanks Mike!

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    To get solid data on the issue, the team conducted a cohort study among ARB initiators in 5 US claims databases covering numerous health insurers. They used Cox regression models to estimate hazard ratios (HRs) and 95% confidence intervals (CIs) for enteropathy‐related outcomes, including celiac disease, malabsorption, concomitant diagnoses of diarrhea and weight loss, and non‐infectious enteropathy. In all, they found nearly two million eligible patients. 
    They then assessed those patients and compared the results for olmesartan initiators to initiators of other ARBs after propensity score (PS) matching. They found unadjusted incidence rates of 0.82, 1.41, 1.66 and 29.20 per 1,000 person‐years for celiac disease, malabsorption, concomitant diagnoses of diarrhea and weight loss, and non‐infectious enteropathy respectively. 
    After PS matching comparing olmesartan to other ARBs, hazard ratios were 1.21 (95% CI, 1.05‐1.40), 1.00 (95% CI, 0.88‐1.13), 1.22 (95% CI, 1.10‐1.36) and 1.04 (95% CI, 1.01‐1.07) for each outcome. Patients aged 65 years and older showed greater hazard ratios for celiac disease, as did patients receiving treatment for more than 1 year, and patients receiving higher cumulative olmesartan doses.
    This is the first comprehensive multi‐database study to document a higher rate of enteropathy in olmesartan initiators as compared to initiators of other ARBs, though absolute rates were low for both groups.
    Source:
    Alimentary Pharmacology & Therapeutics

    Jefferson Adams
    Celiac.com 06/12/2018 - A life-long gluten-free diet is the only proven treatment for celiac disease. However, current methods for assessing gluten-free diet compliance are lack the sensitivity to detect occasional dietary transgressions that may cause gut mucosal damage. So, basically, there’s currently no good way to tell if celiac patients are suffering gut damage from low-level gluten contamination.
    A team of researchers recently set out to develop a method to determine gluten intake and monitor gluten-free dietary compliance in patients with celiac disease, and to determine its correlation with mucosal damage. The research team included ML Moreno, Á Cebolla, A Muñoz-Suano, C Carrillo-Carrion, I Comino, Á Pizarro, F León, A Rodríguez-Herrera, and C Sousa. They are variously affiliated with Facultad de Farmacia, Departamento de Microbiología y Parasitología, Universidad de Sevilla, Sevilla, Spain; Biomedal S.L., Sevilla, Spain; Unidad Clínica de Aparato Digestivo, Hospital Universitario Virgen del Rocío, Sevilla, Spain; Celimmune, Bethesda, Maryland, USA; and the Unidad de Gastroenterología y Nutrición, Instituto Hispalense de Pediatría, Sevilla, Spain.
    For their study, the team collected urine samples from 76 healthy subjects and 58 patients with celiac disease subjected to different gluten dietary conditions. To quantify gluten immunogenic peptides in solid-phase extracted urines, the team used a lateral flow test (LFT) with the highly sensitive and specific G12 monoclonal antibody for the most dominant GIPs and an LFT reader. 
    They detected GIPs in concentrated urines from healthy individuals previously subjected to gluten-free diet as early as 4-6 h after single gluten intake, and for 1-2 days afterward. The urine test showed gluten ingestion in about 50% of patients. Biopsy analysis showed that nearly 9 out of 10 celiac patients with no villous atrophy had no detectable GIP in urine, while all patients with quantifiable GIP in urine showed signs of gut damage.
    The ability to use GIP in urine to reveal gluten consumption will likely help lead to new and non-invasive methods for monitoring gluten-free diet compliance. The test is sensitive, specific and simple enough for clinical monitoring of celiac patients, as well as for basic and clinical research applications including drug development.
    Source:
    Gut. 2017 Feb;66(2):250-257.  doi: 10.1136/gutjnl-2015-310148.