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jasonandsarah

What Is Super Sensitive?

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Little backround on my situation- I've been diagnosed with celiac disease (endoscopy/colonoscopy and blood test) for 2+ years now and my 4 year old daughter got diagnosed 6 months after me. I had stomach issues as far back as I could remember, cramping, nausea, gas, diarrhea and indigestion. I've also had problems with anxiety, ADHD, skin conditions (eczema/dandruff/hives) and depression.

When I was diagnosed 2 years ago I went on a strict gluten free diet and when my daughter was diagnosed we got even stricter and now have separate butter containers,use different pans to cook with and keep gluten free things separately in the fridge and cabinets. Some family members think we go to far even (but that's because they don't have celiac disease (: )

ok so enough blubbering on... my problem is that I'm not feeling better? For the first few months of the diet I felt pretty good but since then it's almost like I'm not even following my diet and I am. I've been back to my gastroenterologist and had another endoscopy that revealed my stomach issue has actually gotten worse. Why am I not getting better? I realized I'm 32 years old and I had celiac for along time before I was diagnosed but I was told 6 months to a year at the most to recover once I was on a strict gluten free diet. This doesn't seem the case for me? My doctor want me to see a nutritionist thinking maybe I'm missing something but I know I'm not. My only symptom that's gone away is diarrhea and it's been replaced with extreme constipation. My daughter has gotten better and because she eats a strict gluten free diet she shows little to no signs of even having celiac disease. I'm sock and tired of being sick and tired any help,thoughts or especially experience would be greatly appreciated.

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You could have refractory sprue.

 

http://www.cureceliacdisease.org/archives/faq/what-is-refractory-sprue

 

But before you jump to that, maybe you want to read this

 

http://www.celiac.com/gluten-free/blog/1038/entry-1780-the-gluten-contamination-elimination-diet-summary-of-dr-fasanos-recent-paper/

 

To answer the title  question - in the case of this forum, super sensitives have been people who feel that they react to very very low, usually undetectable, amounts of gluten.

 

Separate butter, PB, etc is not "super sensitive" - it is normal as a crumb can set off a "normal" Celiac.

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Hi and ((hugs))!

That's rough. It sounds like you are doing the right things. I will say that I felt better the first few months and then got much worse. It was really discouraging. Things didn't get better for me again until I gave up dairy, soy, nuts and legumes. I spent months eating only meat, fruits and veggies. Only whole foods and only things I made myself. But that helped.

Could you be getting small amounts of gluten somewhere? Medications? Since you have a mixed household...do you keep any gluten flours around? Those get on everything. I'm not sure what else to suggest. Hopefully some more people will chime in.

I hope that you get to feeling better soon!

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We don't keep any wheat flour in the house as almost all of our baking is for the whole family so it's all gluten free. The only things we really keep that aren't gluten free are breads and canned foods fory oldest that doesnt have celiac. The bread being the reason we use separate butter, peanut butter and jelly. My wife just can't give up her bread and I don't think she should have to but that's why we're super careful.

Thank you for the links and I'm going to take some time to reat through them.

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Wow! I thought I was on a strict diet! The only problem is have wroth that diet is fresh fruits and a lot of meats seem to cause me a lot of pain and added symptoms. From what I just read I wouldn't be left with much to eat if I had to follow that diet and not eat fruit and meats? Some meats are worse then others,like beef seems to tear my stomach to pieces sometimes.

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You also may be sensitive to something else.  Corn (in any of its forms) makes me just as sick as anything in the wheat family.  While it would be (and most definitely IS) a PITA to edal with a strict elimination diet, it may be worth it to find out if it is something else. Maybe your daughter is not allergic to it but you are. Maybe have a trial run at SCD if you havent already?

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You also may be sensitive to something else.  Corn (in any of its forms) makes me just as sick as anything in the wheat family.  While it would be (and most definitely IS) a PITA to edal with a strict elimination diet, it may be worth it to find out if it is something else. Maybe your daughter is not allergic to it but you are. Maybe have a trial run at SCD if you havent already?

Whats SCD? I'm definitely willing to try the diet outlined in the link above. At this point I'm willing to try anything to feel better.

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I'm thinking that if you just started with separate butter when your daughter got sick, you may still not be completely gluten-free. All containers of "stuff" like mayo, peanut butter, etc. have to be dedicated to the gluten-free eaters in the house. If you haven't already, go to the coping section here and read the Newbie 101 thread for more ideas.

 

 

How about kisses? If a gluten eater doesn't brush well before kissing you you can get glutened. And pet foods can be a problem. Not only do they (most of them) contain gluten that you will breathe in when you pour them into the dish, but your pet is now a source of glutening. Doggy kisses are just as dangerous as people kisses, and kittys may be even worse because they clean themselves with their gluteny tongues. Pet the cat and then pop something into your mouth without washing your hands first, and you are potentially glutening yourself.

 

As someone mentioned, medications and supplements should all be checked for gluten. Eating out is usually dangerous unless it is a totally gluten-free restaurant. And don't forget to read EVERY label, EVERY time you buy something. Formulas change depending on price and availability of ingredients. I have actually seen it when I buy two of something. It was an ice cream that I used to buy. One container from last week's shipment was as usual, but the second container was from a new shipment and it now contained guar gum. Now guar gum is not a gluten ingredient but it COULD have been. See what I mean?

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I'm thinking that if you just started with separate butter when your daughter got sick, you may still not be completely gluten-free. All containers of "stuff" like mayo, peanut butter, etc. have to be dedicated to the gluten-free eaters in the house. If you haven't already, go to the coping section here and read the Newbie 101 thread for more ideas.

 

 

How about kisses? If a gluten eater doesn't brush well before kissing you you can get glutened. And pet foods can be a problem. Not only do they (most of them) contain gluten that you will breathe in when you pour them into the dish, but your pet is now a source of glutening. Doggy kisses are just as dangerous as people kisses, and kittys may be even worse because they clean themselves with their gluteny tongues. Pet the cat and then pop something into your mouth without washing your hands first, and you are potentially glutening yourself.

 

As someone mentioned, medications and supplements should all be checked for gluten. Eating out is usually dangerous unless it is a totally gluten-free restaurant. And don't forget to read EVERY label, EVERY time you buy something. Formulas change depending on price and availability of ingredients. I have actually seen it when I buy two of something. It was an ice cream that I used to buy. One container from last week's shipment was as usual, but the second container was from a new shipment and it now contained guar gum. Now guar gum is not a gluten ingredient but it COULD have been. See what I mean?

Yes I Get your point and just to clarify my daughter got diagnosed over a year and a half ago. Every container in our house that could possibly get cross contamination is used separately.We used different butter from the beginning but started using containers for it after just to be sure nothing gets on it and they're marked so no one gets confused. One for gluten-free and one for everyone else.

The majority of our meals are 100% gluten free even though there's 2 people with celiac and 2 people without. It's just to expensive for our family to have 2 separate meals. Also I get blood tested at my family doctor every 3-6 months and since I've started the diet they've always came back perfect?

No pets in the house except for fish and they eat frozen shrimp and stuff.

I'm very careful and have already thought of these things. I used to try and dig through ingredients list but now I only eat things that specifically say gluten free.

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So....  just to clarify--

 

Your Celiac blood tests/antibodies are great?

 

Your endoscopy shows that your stomach?  or your small intestines?  are worse?

 

Because - if its your stomach - its not Celiac.  And if its your small intestines - it might be something else.  One of the links I gave you had a link to what other issues must be eliminated.

 

 

http://www.cureceliacdisease.org/archives/faq/what-else-can-cause-damage-to-the-small-intestine-other-than-celiac-disease

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OK, now we're getting somewhere. :) Your blood tests come back OK, but you said endoscopy showed that your stomach issue has gotten worse. Tell us more about that.

 

You might very well have intolerances to other foods as was mentioned. An elimination diet might help you ferret them out. Try getting your diet down to just plain whole foods for a while - meat, veggies, potatoes, maybe rice. Then if you feel better after a while (give it time - maybe a month or so), add back one food at a time. It's a pain and it seems to take forever. I know because that's what I had to do. It turned out that I couldn't tolerate corn or soy, plus a few other things like blueberries and almonds. A lot of folks have trouble with dairy too. (I didn't, and I thank God I could still eat cheese.)

 

Anyway, it took three and a half years of eating nothing but meat, cheese, rice, broccoli and cauliflower for every meal before my gut finally healed. Now I can eat everything except gluten and I'm having a ball! I'm eating gluten-free pasta now and turkey (had to give that up before because of the corn in the stuff they inject them with.) I'm enjoying chocolate again and grilled cheese sandwiches. It was tough for a while there and I didn't think I'd ever really enjoy food again but now every day I look forward to my meals. :)

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So....  just to clarify--

 

Your Celiac blood tests/antibodies are great?

 

Your endoscopy shows that your stomach?  or your small intestines?  are worse?

 

Because - if its your stomach - its not Celiac.  And if its your small intestines - it might be something else.  One of the links I gave you had a link to what other issues must be eliminated.

 

 

http://www.cureceliacdisease.org/archives/faq/what-else-can-cause-damage-to-the-small-intestine-other-than-celiac-disease

No I'm sorry for the misrepresentation I have a tendency to call everything in that area my stomach..... The lining of my small intestine has gotten worse. At the very least hasn't gotten better. I have no villi and the lining of my small intestine looks either pale white or red and inflamed. My first blood test was very high if I remember correctly? I want to say in the high 150's? But the test I've had since then have dropped back down to normal even though my issues have not?

I hope I'm making more sense now and I hope I'm remembering everything correctly. I'm really infamous for not going to the Dr and I just found this all out recently because I skipped my yearly endoscopy last year but went and got it this year.

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Are you saying I could of been mis diagnosed though? Because I've had 2 different endoscopys by 2 different doctors with the diagnosis of celiac sprue disease?

 

 

No.  I am not saying you don't have Celiac.  I am saying you may have something else, too and the doctors should be looking for it.

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No. I am not saying you don't have Celiac. I am saying you may have something else, too and the doctors should be looking for it.

I completely agree with you there! I have little faith in the Dr though unfortunately. After years and years of complaining about my symptoms it's hard not to lose faith.

This time when I went back I was told for the first time I wasn't allowed to take ibuprofen. I had been taking them once and awhile, so that was there only answer to my not getting better? I'm talking 2-3 200mg tablets maybe twice a week. Looking back on it I sould of known I shouldn't take them with stomach issues but I had never been told so I guess I overlooked that one.

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If I'm not mistaken both dairy and soy can cause villous atrophy. If your celiac antibodies are back to normal it might be one of these that is the culprit.

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Yes, soy is in a lot of things, but if you eliminate both soy and dairy for a while and find yourself feeling better, then trial one or the other and find yourself getting sick again, you'll have your answer.

 

It might take a long time though. It sounds like you have a LOT of damage. It took me three and a half years, so if it takes six months or more, don't be surprised.

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Yes, soy is in a lot of things, but if you eliminate both soy and dairy for a while and find yourself feeling better, then trial one or the other and find yourself getting sick again, you'll have your answer.

 

It might take a long time though. It sounds like you have a LOT of damage. It took me three and a half years, so if it takes six months or more, don't be surprised.

Ty for the replay and relating to my situation. I'm in contact with my doctor and am asking about this diet. Thank you for shedding someb light on this information I didn't know.

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Specific Carbohydrate diet is S.C. D.  You can google it and find more information.  It is a diet for helping to heal the gut after celiac disease.  A book about it is called, Breaking the Vicious Cycle.  I found the food satisfying and delicious.  I have no problem eliminating soy.  Eat meat, vegetables, nuts (if tolerated) and I hope it will help you get better, but if it isn't the whole answer, don't give up.

 

I also suggest they check for parasites (stool test).  I know from personal experience these can damage the small intestine.

 

Have you tried Digestive enzymes.  When the small intestine damage, the villi can't do their job of telling the pancreas to fire.  This was told to me of my functional medicine nurse.  The digestive enzymes can help to break down your food until the villi heal enough to do their job.

 

I would also suggest looking for other allergies that may be giving your trouble.

 

I don't want to over-whelm you by making you think that you need to do everything at once, but only to give you a starting list of things to consider and do when you are ready.

 

Dee

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Do you use personal care products that your daughter does not use? 

 

While my blood tests were okay while I used regular personal care products, I still felt terrible. My blood tests were in the okay zone (14… should be >20)

 

I realized at some point I was reacting to my personal care products. I switched over to certified gluten free products and I felt so much better. I did this slowly, but you might want to change your soap and shampoo and maybe try no other products and see what happens? I use hugo naturals, desert essence organics, Red Apple Lipstick etc...

 

My blood tests also went down afterwards, from 14 to 8. I don't know if that means anything, just thought it was worth noting.

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Little backround on my situation- I've been diagnosed with celiac disease (endoscopy/colonoscopy and blood test) for 2+ years now and my 4 year old daughter got diagnosed 6 months after me. I had stomach issues as far back as I could remember, cramping, nausea, gas, diarrhea and indigestion. I've also had problems with anxiety, ADHD, skin conditions (eczema/dandruff/hives) and depression.

When I was diagnosed 2 years ago I went on a strict gluten free diet and when my daughter was diagnosed we got even stricter and now have separate butter containers,use different pans to cook with and keep gluten free things separately in the fridge and cabinets. Some family members think we go to far even (but that's because they don't have celiac disease (: )

ok so enough blubbering on... my problem is that I'm not feeling better? For the first few months of the diet I felt pretty good but since then it's almost like I'm not even following my diet and I am. I've been back to my gastroenterologist and had another endoscopy that revealed my stomach issue has actually gotten worse. Why am I not getting better? I realized I'm 32 years old and I had celiac for along time before I was diagnosed but I was told 6 months to a year at the most to recover once I was on a strict gluten free diet. This doesn't seem the case for me? My doctor want me to see a nutritionist thinking maybe I'm missing something but I know I'm not. My only symptom that's gone away is diarrhea and it's been replaced with extreme constipation. My daughter has gotten better and because she eats a strict gluten free diet she shows little to no signs of even having celiac disease. I'm sock and tired of being sick and tired any help,thoughts or especially experience would be greatly appreciated.

I know this is an older post and I am not aware of some of the other remarks as there is a lot to read through, but I did read some of them. My first question would be, have you thought maybe you need to go not only gluten free but completely grain free and also adding dairy, soy, and certain nuts? There is a diet called the AIP (auto immune protocol) and it is a very strict Paleo diet. It is designed to help with leaky gut. It sounds to me you may have this problem. Your gut seems to me that is was damaged more severely than your daughters because you possibly have been living with this much longer than the two years. Your daughter has probably had a faster recovery because it was caught at such a young age. There are a lot of groups out there that have discovered this helps and once you repair your gut and the lining is not so inflamed and not leaking into other parts of your body then you can start introducing some of these things back into your diet. I personally would stay away from the soy all together. Some just don't break down soy well. There is a group called AIP on Facebook and it a closed group (private) and no one can see what is being posted unless they are a member of this group. Many patients who have thyroid issues also must stay away from gluten because of what it does to their thyroid gland. It is a very strict diet, but seems to me you won't have a problem with this by your post. I hope this helps you and you are able to find some relief and get back to somewhat of a normal life. Best of Luck!

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I would like to say also, that if one has been sick a very long time, it can take more than 6-12 months.  The situation can be complicated with other food intolerances or results of the illness.  I had been sick for 30+ years and still felt I am transitioning after 3 years.  I don't want to discourage anyone making them think it will take that long, but only explain that sometimes it does.

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