Help, 1 Year Glute Free And Worse

[abbypanda]

help please. I hvae been gluten free for 1 year since my diagnosis last december. the first week i started gluten free diet, i was ok for a month. it was great. then all of a sudden i started having bad problems. my stomach has been bloated straight since may! even when i was eating pizza nightly it wasnt bloated for this long w/ no rest. i also have diarrhea on a daily basis and fatty stools. I feel sick and get sick often.

I on occasion think I get glutened by something that i didnt know had it in it. but i have not had bread in 1 year, and i avoid it at all costs.

is there hope?

[VegasCeliacBuckeye]

help please. I hvae been gluten free for 1 year since my diagnosis last december. the first week i started gluten free diet, i was ok for a month. it was great. then all of a sudden i started having bad problems. my stomach has been bloated straight since may! even when i was eating pizza nightly it wasnt bloated for this long w/ no rest. i also have diarrhea on a daily basis and fatty stools. I feel sick and get sick often.

I on occasion think I get glutened by something that i didnt know had it in it. but i have not had bread in 1 year, and i avoid it at all costs.

is there hope?

What have you been eating? include everything you can think of (condomints, spreads, etc)

Did you change your to gluten free toiletries?

Are you eating out at restaurants often?

Do you buy gluten free food (bread is only a small part of it)

Answer these and we can help you more...

[kbtoyssni]

Yes, there is still hope. It sounds like you've got some gluten sneaking in somewhere... It's going to take some detective work to find. Or you could have other intolerances. My peanut intolerance sure makes me feel like I've been glutened.

I'm interested in your answers to broncobux's questions. I also wonder - do you live alone? Could other people be accidently contaiminating your food or your kitchen space or touching things with their hands after using gluten-lotions?

[zansu]

It's possible that you have the good first month from radically cutting down on gluten, and now your body is saying I WANT NO GLUTEN, NONE AT ALL! while all this time you've been still getting some.

KBTOYSNI is right, you need to review EVERYTHING you're eating for all the hidden gluten sources, cross contamination possibilites, etc and get rid of ALL the gluten.

then you get to consider other sensitivities... but cross that bridge when you're sure all the gluten is gone.

[abbypanda]

It's possible that you have the good first month from radically cutting down on gluten, and now your body is saying I WANT NO GLUTEN, NONE AT ALL! while all this time you've been still getting some.

KBTOYSNI is right, you need to review EVERYTHING you're eating for all the hidden gluten sources, cross contamination possibilites, etc and get rid of ALL the gluten.

then you get to consider other sensitivities... but cross that bridge when you're sure all the gluten is gone.

Thanks for the replies.

On a daily basis I have coffee, the creamer says "gluten free".

I have some bacon, which doesnt have any ingredients on the no no list I found on this site.

I get smoothies from tropical smoothie, or I make my own. I emailed tropical smoothie for alist of ingredients and the ones I get they said are gluten free, and from the ingredients they appear to be correct.

I eat vegetables I cook myself, hamburgers I make myself, rice, potato chips sometimes.

I read the ingredients on everything. I stick to it. If we eat out I go to outback b/c they have a gluten free menu.

I also eat fruits.

sometimes I also get corn tortillas and make tacos, and have vegetable beef soup I make that is water based w/ just meat and veggies in it, I also cook steaks and check the meat ingredients.

That's the extent of my diet, which over the past year has become pretty boring.

Cokes seem to bother me a lot whereas they did not before, I cant figure that out, but I eliminate them. It helps some but not completely.

My assumption was that my stomach was reacting from a small amount of gluten I was getting and "freaking out" b/c I went cold turkey so a little bothered me a lot.

But then I did some research for the other problem and it said that problems w/ your stools like that are a sign of malabsorption. And if my intestines are supposed to be healing themselves, why is that getting worse?

I have not changed any toiletries, never thought of that.

[CarlaB]

I have not changed any toiletries, never thought of that.

My guess is that you'll find the culprit here! Shampoos and conditioners can get in your mouth. So can hairspray, hand lotion, lipstick/gloss, etc. Also your significant other should use gluten-free toiletries, too!! Speaking of ... kisses need to be gluten-free as well.

[loraleena]

You could also have candida overgrowth which is common in celiacs or other food intolerances. As far as toiletries go I use Giovanni or Shakai shampoo and conditioner. I use Tom's of Maine soap and toothpaste and Avalon Organics lavender line for very sensitive skin. I use Aubrey Organic sensitive skin cream (unsented). Burt's Bees makes gluten free lipstick and I use Kiss My Face lip balm.

[kbtoyssni]

I get smoothies from tropical smoothie, or I make my own. I emailed tropical smoothie for alist of ingredients and the ones I get they said are gluten free, and from the ingredients they appear to be correct.

Cokes seem to bother me a lot whereas they did not before, I cant figure that out, but I eliminate them. It helps some but not completely.

I have not changed any toiletries, never thought of that.

Sounds like you're doing a pretty good job of being gluten-free. I picked out the three statements that made me wonder.

I'm not familiar with tropical smoothie - is it a restaurant-type place? If so, if they make other smoothies with gluten ingredients and don't clean the blender they could be contaminating yours.

Some people are sensitive to the caffeine in coke. I get horrible stomach pain from the caffeine in coffee. I have to drink the decaf.

The toiletries are definitely worth a close look. Gluten is usually pretty well labeled on them.

[LizMaude]

Could some of your symptoms be from Gastritis? I just got diagnosed with both a few months ago so I can't say if going to get worse or better. Soda, caffeine, fresh fruit, fresh veggies, and tomato sauce really set it off.

Of course I’m not saying it’s not gluten…. That is very likely.

[Looking for answers]

Could some of your symptoms be from Gastritis? I just got diagnosed with both a few months ago so I can't say if going to get worse or better. Soda, caffeine, fresh fruit, fresh veggies, and tomato sauce really set it off.

Of course I’m not saying it’s not gluten…. That is very likely.

LiZ Maude has a good point. This happened to me when I had gastritis . . . do you have ingestion, too? If I were you, I would try cutting out the smoothies from the cafe for a month or so and see if you feel better. My favorite smoothie place promised my smoothie was gluten free but I kept feeling sick each time I had one. Also, have you traveled outside of the country or do you ever eat raw fish? It could be a parasite.

I would also recommend taking accidolphlus and digestive enzymes--they might ease it some. And try to avoid antiacids . . . I've been reading that they destroy our digestive tracts and make these symptoms worse over time.

I feel for you! I hope you get well soon!

[happygirl]

I would recommend having the FULL Celiac blood panel run again, to see if you are still reacting to gluten (i.e., if gluten is in your system somehow).

If it is normal, you may have other problems (other food allergies/intolerances), or something else. Many of the symptoms are the same and overlap with Celiac and non-Celiac problems. Your first step should be to identify if it is gluten or not.