90 days gluten-free but very sick.

[Ginger1012 0]

I have been strictly gluten free for 90 days now. I went through a detox for two weeks after being gluten-free then started to do better but then 4 or 3 weeks ago I just got very very sick again. All my symptoms came back, but worse plus new symptoms. I have had diarrhea for 3 weeks every day now. I am in so much pain all I can do is sit in bed and go to school. Doctors won't see me because they don't know what is wrong. I am out of money for other docs. I don't know what to do or if celiac is really is my issue. So much fatigue and pain I had to quit my job and sit in bed all day. I am just getting worse and I don't know where to go for help. 

[Ennis_TX 817]

First were you diagnosed with celiac?

Second what is you basic diet right now, there are some other common issues that go along with celiac food intolerance wise we might be able to narrow this down.

Third did you read hte 101 and make 100% sure that nothing is contaminated? This sounds like you might have contaminated a common used prep surface, utensil, pot. Or have a contaminated spice, condiment, or something new in your house like a cleaner, hygiene product. etc that might be leading to more issues. I can only say if you can get your antibodies checked to see if still elevated to know if it is gluten or something else.

Imodium will help with the D, Anise (the spice) and gas X can help with bloating, pepto bismal can help overall. These can help to make it more manageable. \

I might suggest trying to eliminate the chance of it being cookware by getting some cheap new microwave cook ware like a steam tray and omelette maker and just having steamed veggies, eggs, and perhaps a baked sweet potato. Avoid condiments and spices for a bit and see if you can clear it up taking it down to whole unprocessed foods. I find doing this and resetting helps after a issue (I got glutened this last weekend and did the egg and veggie diet with avocado and almonds). Bonus of cooking in the microwave is you get softer end product that is more moist, less burnt and oxidized making digestion easier in my opinion.

[Ginger1012 0]

18 minutes ago, Ennis_TX said:

First were you diagnosed with celiac?

Second what is you basic diet right now, there are some other common issues that go along with celiac food intolerance wise we might be able to narrow this down.

Third did you read hte 101 and make 100% sure that nothing is contaminated? This sounds like you might have contaminated a common used prep surface, utensil, pot. Or have a contaminated spice, condiment, or something new in your house like a cleaner, hygiene product. etc that might be leading to more issues. I can only say if you can get your antibodies checked to see if still elevated to know if it is gluten or something else.

Imodium will help with the D, Anise (the spice) and gas X can help with bloating, pepto bismal can help overall. These can help to make it more manageable. \

I might suggest trying to eliminate the chance of it being cookware by getting some cheap new microwave cook ware like a steam tray and omelette maker and just having steamed veggies, eggs, and perhaps a baked sweet potato. Avoid condiments and spices for a bit and see if you can clear it up taking it down to whole unprocessed foods. I find doing this and resetting helps after a issue (I got glutened this last weekend and did the egg and veggie diet with avocado and almonds). Bonus of cooking in the microwave is you get softer end product that is more moist, less burnt and oxidized making digestion easier in my opinion.

Yes, I was. I had two weak positive blood work, then an endoscopy not for celiac but was very inflamed, and one positive genetic for celiac. My diet is very limited right now. I am almost paleo. I am really struggling to find food that I can eat and not bother my stomach. I eat a lot of nuts, peanuts, beans, chicken, veggies, fruit, and soups. I have cleaned out the house from gluten (except for my dad's rolls  ) I can not change out pans and cookware. I could try to get my own personal but it would be hard.

How did you get glutened? 

[TexasJen 42]

I live in a house where some people eat bread.  I do not use the toaster that toasts regular bread. All sandwiches are made in a special area of the kitchen and I do not prepare any of our other food there. If you have touched bread, you have to wash your hands before you touch anything else in the kitchen.  After you eat bread, the dishes go directly (and only) into the sink.  I rinse any plates and forks extremely well that have had bread on them and then I put them in the dishwasher (they essentially get washed twice). Then I rinse out the sink.  I have a separate dish scrubber that I use when the plates have had anything with gluten on them. 

We don't cook with flour or bake with real flour(except once a year when I let my kids make their birthday cakes). The flour goes everywhere and coats the surface of countertops. 

Do you make all your soups from scratch? A lot of soups have flour as a thickener. Also Nuts are often times made in facilities that process wheat. Planters nuts seem to be pretty safe or shop at Nuts.com - they have quite a few options.

Hope you feel better soon!

[Ennis_TX 817]

1 hour ago, Ginger1012 said:

Yes, I was. I had two weak positive blood work, then an endoscopy not for celiac but was very inflamed, and one positive genetic for celiac. My diet is very limited right now. I am almost paleo. I am really struggling to find food that I can eat and not bother my stomach. I eat a lot of nuts, peanuts, beans, chicken, veggies, fruit, and soups. I have cleaned out the house from gluten (except for my dad's rolls  ) I can not change out pans and cookware. I could try to get my own personal but it would be hard.

How did you get glutened? 

Contaminated mushrooms.....they often grow them from rye or barley seeds that they put the spores on or grow in a compost that con contain wheat...in my case the company says they used rye seeds for the starter. (called after the fact)   I assumed the sliced prewashed ones would be safe and they were on sale....go figure. Anyway Might try my tips for using microwave prep ware for awhile things are cheap. Clean out the microwave put paper towels down inside and cover your food if you need to. Jen gave some decent tips also. I might say if you do dry beans watch out for them also, I am on a keto/paleo diet myself pretty much a very low carb diet consisting of mostly nuts, seeds, egg whites, low carb veggies ......

https://www.nordicware.com/microwave

^Steamers, egg cookers, splatter guards. egg poachers, bacon racks, etc...everything you need to fix your meal in a microwave without pots or pans and cheap... you find alot of them in the microwave section of walmart. I even make make shift tortilla bu using the plates with a lip or the omelette maker and mixing up egg whites, with a tbsp or two of coconut flour and sometimes another nut meal pouring it in and cooking for 1-2 mins making a thin sheet I can use to roll stuff up in.

 

[Fbmb 32]

On 5/23/2017 at 4:57 PM, Ginger1012 said:

I have been strictly gluten free for 90 days now. I went through a detox for two weeks after being gluten-free then started to do better but then 4 or 3 weeks ago I just got very very sick again. All my symptoms came back, but worse plus new symptoms. I have had diarrhea for 3 weeks every day now. I am in so much pain all I can do is sit in bed and go to school. Doctors won't see me because they don't know what is wrong. I am out of money for other docs. I don't know what to do or if celiac is really is my issue. So much fatigue and pain I had to quit my job and sit in bed all day. I am just getting worse and I don't know where to go for help. 

Ok, don't panic. First of all, panicking about this will only make it worse. It's amazing how your mind impacts your belly. Know that 3 months is nothing when we are talking about healing from Celiac. I am 7 months in and I still don't feel super. I remember coming here at 3 months and telling everyone how frustrating this is. But I went to my GI 2 months after diagnoses and my antibodies were almost in the normal range, whereas before they were >100. So I was healing and I wasn't being contaminated. It just takes a while. Gluten destroyed your small intestine. Your small intestine is responsible for basically all of your digestion, and it's been run through the ringer. 

Of course this isn't to say that maybe you're ingesting gluten without realizing it. I knew I wasn't. I was so anal about everything and I spent hours reading labels and compulsively handling food. I didn't eat out at all. Even with all of that, I'm at about 50%. Half the time it's good, half the time I am frustrated because I still deal with loose stools. No idea why. It's super inconsistent. So I don't think it's a food intolerance, as it happens here and there regardless of what I eat. For me I think much of it is my anxiety, but I also think I'm still healing. 

I know you say doctors won't see you, and I don't know where you live, but I would recommend finding a doctor who will.