end of my rope

[Dee1234]

9 hours ago, Gemini said:

Almost everything you listed as containing gluten does not.  Some definitely have gluten free counterparts that can easily be found in most grocery stores but things like bacon, red wine, ham and a few others are naturally gluten free so a I am not sure where you came up with this list.  Many of what you listed are not the healthiest choices out there and may cause stomach distress in some people but it most likely would not be from gluten.  As always, read the label!

Yea most of those are naturally gluten-free,  but a lot of processed foods....like ham can have gluten added. It says right on the label.

 

I'm lucky enough to live near an ALDIS grocery store .they have certified gluten-free products and it's not as expensive as reg grocery gluten-free stuff! ( thank goodness!) 

 

Ok. Well....it works for me. It wasn't until i stopped eating all those items withvtge extra added stuff that i felt 110% better. Plus...my issue is a brain issue...not so much a stomach issue. 

 

aybe people with the brain disease are more sensitive to it affecting them? 

 

Again. It worked for me and iconictruth sounds like she's having the exact same thing happen. 

 

Maybe I'm posting in the wrong forum. 

[kareng]

43 minutes ago, Dee1234 said:

Yea most of those are naturally gluten-free,  but a lot of processed foods....like ham can have gluten added. It says right on the label.

 

I'm lucky enough to live near an ALDIS grocery store .they have certified gluten-free products and it's not as expensive as reg grocery gluten-free stuff! ( thank goodness!) 

 

Ok. Well....it works for me. It wasn't until i stopped eating all those items withvtge extra added stuff that i felt 110% better. Plus...my issue is a brain issue...not so much a stomach issue. 

 

aybe people with the brain disease are more sensitive to it affecting them? 

 

Again. It worked for me and iconictruth sounds like she's having the exact same thing happen. 

 

Maybe I'm posting in the wrong forum. 

Celiac is hard enough, we just hate to see people making it any more difficult than it needs to be.  Maybe you have other food sensitivities.....maybe when you have healed you will be able to tolerate other foods....  

i have heard great things about the Aldi products, but I imagine they have a lot of extra ingredients, too.

[Gemini]

2 hours ago, Dee1234 said:

Yea most of those are naturally gluten-free,  but a lot of processed foods....like ham can have gluten added. It says right on the label.

 

I'm lucky enough to live near an ALDIS grocery store .they have certified gluten-free products and it's not as expensive as reg grocery gluten-free stuff! ( thank goodness!) 

 

Ok. Well....it works for me. It wasn't until i stopped eating all those items withvtge extra added stuff that i felt 110% better. Plus...my issue is a brain issue...not so much a stomach issue. 

 

aybe people with the brain disease are more sensitive to it affecting them? 

 

Again. It worked for me and iconictruth sounds like she's having the exact same thing happen. 

 

Maybe I'm posting in the wrong forum. 

Yes, that is why I mentioned always reading a label.  Just because one brand of ham may contain gluten does not mean they all do.  I have yet to find one that is not gluten free but I am sure they do exist.

[GFinDC]

Sometimes turkeys and hams are labeled as having gluten in them, but it is really in a separate gravy / glaze packet that can removed and tossed.

If it works for you Dee, that is fine.  Some supposedly naturally gluten-free flours/grains are cross contaminated with gluten during shipping or processing.  So it is possible to have problems with naturally gluten-free grains etc if that is the case.  It's always a good idea to research a product if it is new to you and see if other celiacs have had problems with it.  Often people will post reviews or complaints of problem products on this forum.  If in doubt, it doesn't hurt to check with the maker of the product also.

I made a turkey for Thanksgiving that had a gravy packet in a plastic baggie.  I tossed the gravy packet and all is well.

[ironictruth]

20 hours ago, Dee1234 said:

I can't say if it's normal or not. 

 

All i know is that i hardcore cut out every single thing that could possibly contain even at tiny amount of gluten...And i got better.

 

 

Honestly i wouldn't mess around with it. My dr friend that i ended up speaking to months later. (friend....he lives far away and is not my dr) said that gluten ataxia can cause permanent damage and that i was lucky i thought of it first. Then he yelled at me for not calling him for medical advice. Lol

 

But seriously, he said it sounds like i have it and not to take any chances. It can build up and get progressively worse. 

 

I had those same symptoms and a few more i forgot to mention like a rash on my legs for the past....30 yrs that no dermatologist could determine, btw, and superficial...like surface of the skin pain. Sort of on my wrists, back, hips, stomach. It felt like if you were a kid and skinned your knee. Sometimes if my bf would touch that spot ...or no one touching me. And it got worse. 

 

 

All that stuff went away after stopping gluten.

So...my point is...research it and stay away from anything on the list that might have gluten. Like cold cuts, ice cream, medications have gluten in the coating sometimes, but the pharmacy usually has gluten-free, vitamins too, sour vream, certain red meats, turkey, chicken on the rotisserie, ham, any sausage, candy, red wine and basically all alchohol except vodka, gin, and a few brands of white wine (arbor mist is gluten free), any bbq sauce, ketchup, most sauces,bacon... I can't think of anything else.

And the obvious wheat products in general. 

So.....at least try it. What's it going to hurt? 

 

 Good Luck.

.yes, I have seen this on here before. That the nuero folks seem hyper sensitive. I have also read concern about processed gluten-free foods in general, that they may all contain a trace amount and if you eat enough, they sort of add up. 

I am so tired of the guessing games about my health and praying it is gluten related. Latest scan just showed some mild contrast area in the cecum and appendix, as well as my intestine being full despite going 3x that day. 

My GI ordered a tumor study for this week and still plugging away with what the celiac specialty clinic will want. 

Tampering with the idea of taking elavil for pain, but afraid to add more damn drugs. Also tampering with begging for low dose prednisone to see if it calms anything down. 

One day at a time. 

Thanks everyone!