Gluten Free Diet Not Working -- Maybe Worse

[jbusta88]

I was diagnosed with Celiac disease a month ago after eight years of thinking I had Fibromyalgia (body pain) and an inflamed prostate (abdominal pain/bloating).

I have been gluten free for three weeks and if anything the bloating and abdominal pain is worse. I realize it might take a while to have the pain go away, but should it get worse?

I have tried everything to make sure I am not getting any cross contamination including just eating diet of rice, bananas and water. Nothing helps.

[Lisa]

Recovery time varies widely. It is not unusual to last three weeks or longer depending on the extent of your damage.

Gluten can be very tricky. Have you checked you vitamins, meds, lip balms, lotions or scratched pots and pans or shared toaster.

Dairy products are often recommended to eliminate. It can create the same type of symptoms of gluten, but it can be re-introduced later after some healing has taken place.

Perhaps a food diary may help pinpoint a problem.

[QueenOfPain]

Oh, I really feel for you! Hang in there, though. I was misdiagnosed for 19 years, and just found out last year that all of my ailments were caused from Celiac. I started the gluten-free diet back in September and I swear my diarrhea (sorry if TMI) got way worse--and it was already pretty bad! By November I was ready to give up the diet, but I decided to post on here and got some really good advice that made me keep on trucking along gluten-free. I reduced my dairy intake and stopped eating the gluten-free pasta and bread, etc. (because they can be kind of hard to digest while your body is healing). And FINALLY by sometime in December my diarrhea pretty much disappeared. Actually all of my symptoms are finally better, except for my migratory joint problem. But I figure that will clear up too if I give it a little more time. We all recover at different rates. I kept reading that most Celiacs feel better after 2 weeks to a month of being gluten-free, but it took me a good 3 months to feel better. And like you, in the beginning it felt like my symptoms worsened.

You're not alone! Hope this eased your mind a bit.

[Mike M]

I was diagnosed with Celiac disease a month ago after eight years of thinking I had Fibromyalgia (body pain) and an inflamed prostate (abdominal pain/bloating).

I have been gluten free for three weeks and if anything the bloating and abdominal pain is worse. I realize it might take a while to have the pain go away, but should it get worse?

I have tried everything to make sure I am not getting any cross contamination including just eating diet of rice, bananas and water. Nothing helps.

You are getting some great advice from the other posters. I did want to mention to double check your rice. I, like you, was eating just the basics and was buying rice from Kroger's and getting nailed but did not know why until I found what I thought was a wheat kernel in my rice. Went back to the store and my eyes about fell out. The rice I was buying was only rice, but the same company had about 6 other blends of rice including a "whole grains" mix, with you guessed it....Wheat, rye and rice blend. UUhhhggg, not good. There was obvious cross contamination issues at the factory. All the best, Mike

[Jaimepsalm63]

Hey Jbusta88,

When I first began the gluten free journey I was so frustrated because I felt worse the first 6 month. than I had when I was eating gluten. Don't give up. Every body is different every journey is different. There are common threads with some things and nothing in common on others.

Do make sure you aren't dealing with CC though. (My husband figured it out...I had a convection oven that I was using for my baking gluten free with the others doing gluten. We now have a double oven so I don't have that issue. I felt better after that switch.)

This forum will help you out. Ask questions. We've all been there and every question has been asked at one point in time. You should be able to find answers here with a community that won't judge you. Again, we've all been there with joys, sorrows, frustrations, and relief.

Look at your lotions, shampoos, soaps, everything that comes in contact with you and the space you live in. It gets easier as time goes on to be gluten free and to read labels.

Take Care,

Jaime

[jbusta88]

Hey Jbusta88,

When I first began the gluten free journey I was so frustrated because I felt worse the first 6 month. than I had when I was eating gluten. Don't give up. Every body is different every journey is different. There are common threads with some things and nothing in common on others.

Do make sure you aren't dealing with CC though. (My husband figured it out...I had a convection oven that I was using for my baking gluten free with the others doing gluten. We now have a double oven so I don't have that issue. I felt better after that switch.)

This forum will help you out. Ask questions. We've all been there and every question has been asked at one point in time. You should be able to find answers here with a community that won't judge you. Again, we've all been there with joys, sorrows, frustrations, and relief.

Look at your lotions, shampoos, soaps, everything that comes in contact with you and the space you live in. It gets easier as time goes on to be gluten free and to read labels.

Take Care,

Jaime

Thank you Jaimepsalm63 and everyone else who has responded. Sounds like it is not uncommon for it to get worse before it gets better.

I'm definitely going to check my rice. I haven't taken any medications and stopped using my blistex but I hadn't thought about shampoo and soap. I'll definitely check that as well.

I haven't eliminated all gluten from my house. My wife and 2 year old son are still eating gluten foods. I only use stainless steel pans and utensils because I've heard wood, teflon and cracked plastic are a no no for cross contamination. I'm trying to be extra careful and only cook simple things separated from the rest of the family cooking, but it is tough.

Does everyone usually go to all gluten free house when they start? Or can it be done with other gluten eaters in the same house?

[QueenOfPain]

There's still gluten in my house. I have two very young children that are quite picky. They haven't been very receptive to my gluten-free cooking. BUT, now through trial and error I am slowly finding gluten-free recipes that the entire family appreciates. One day I hope to have my family eating the same gluten-free meals as me (It's no fun having to prepare two separate meals!)

But, yes, I try to be very careful about cc, and so far I don't think I've had any problems. But, maybe I'm just not as sensitive to gluten as some. Sorry, I'm still kinda new to this.

[Gfresh404]

I was diagnosed with Celiac disease a month ago after eight years of thinking I had Fibromyalgia (body pain) and an inflamed prostate (abdominal pain/bloating).

I have been gluten free for three weeks and if anything the bloating and abdominal pain is worse. I realize it might take a while to have the pain go away, but should it get worse?

I have tried everything to make sure I am not getting any cross contamination including just eating diet of rice, bananas and water. Nothing helps.

Supplements always speed up the healing process for me. I have found that when I eat gluten, it seems that it is accompanied by bacterial overgrowth and/or Candida. Try some enteric coated peppermint capsules to reduce bloating and improve digestion. And add, as many herbs and spices as you can like pepper, ginger and cinnamon, just make sure you check labels when adding spices.

[gfwb]

When I was first diagnosed, I was completely overwhelmed. The biggest help for me was the book, The Gluten Free Bible. I've loaned my copy out to a couple of other people who were diagnosed after me, and they've all gone out and bought their own copy. My biggest advice is: 1) have your doctor test all your nutrient levels and get on some gluten free supplements, and 2) don't even worry about learning to make breads or even deal with any type of gluten free baking. Just eat plain foods that don't make you sick. For me it was steak, tuna and potatoes. Rice, especially brown rice, was too much early on. Once you feel better, you'll have the strength and mental clarity to add items to your menu.

I really hope you feel better soon. You've come to a good place for advice.

[Jaimepsalm63]

I'm the only gluten-free person in the house. I have my own cabinet, take the top shelf in the refrigerator, and the top shelf in the pantry area we have. I have my own oven now (we have a double oven) because the convection oven (has a fan) was blowing gluten all over my gluten-free food. I don't have a toaster because I do my toast in the oven on broil. I can cook multiple things that way. I also have my own flat wear only because the drawer gets crumbs in it...so I have some in my section of my cabinet. I have my own counter top to prepare food too. So, no gluten is allowed near my counter top.

I have things labeled in the refrigerator when I have left overs. So, this means I have my own set of plastic containers for that purpose. It's less confusing for my kids when they say "Mama's". They know it's mine and not to even ask about it.

We have the added complexity of having a child allergic to dairy and another allergic to corn, soy, and oats. I'm thankful my middle son and husband can have whatever they would like.

It is a lot easier just having my own places to put my food (and it's always on top so there is less likely to be cc) than to try and keep it all mixed up. I haven't had a problem with CC after doing it this way. I don't do a lot of baking of the breads, cakes, and such. I'm not much of a bread person anyway.

I hope this tidbit helps out a bit.

Jaime