Gluten-Free Frustration!

Hi, Renee--It really sounds like you just have ongoing issues from an unhealed gut from celiac, not necessarily IBS. Most cases of IBS are really undiagnosed celiac. BUT, if you followed a traditional gluten-free diet for a while that included a lot of processed foods labeled gluten free, you could stay unhealthy and even get worse IMO and other's. When I first went gluten free, I coudn't eat any greens at all because my gut was so compromised. The processed foods that are labeled gluten free often contain starches and gums, plus lots of empty calories and I didn't do well on those either. It takes time to heal, but you have to focus on naturally gluten-free foods to do it or foods easily made gluten-free. I lead a support group and have a website incorporating this approach. It makes life so much easier and you do heal.

IBS can be caused by gluten. My husband and I are both gluten sensitive. We go to fast-food restaurants and order food without a bun. Check the menus ahead of time; most have gluten-free options. People aren't insensitive; they just don't think--like the servers who bring crackers even though you said "no croutons; I can't eat wheat."

Have you tried taking probiotics? Have you looked into SIBO (small intestinal bacteria overgrowth)?

You are completely and utterly correct! I don't have a healed gut at all. So when you say gluten free foods, what exactly is besides fruits and veggies?

I have never looked into SIBO but yes I've taken probiotics and have tried many. Though I've tried many I still haven't found one that works more then 1 week! I'm not sure what is wrong with my body, but it sure doesn't like much! I will look more into SIBO though! Thanks!

I feel your pain. My holidays go the same way. My Mother and Father-in-law wanted to take me out for my birthday and I told them that I could not go to a restaurant that does not have a gluten free menu. They kept suggesting the same gluten "unfriendly" restaurant to the point that my husband had to step in and point blank say "we are not going there!" Sometimes I think people think that I am making it up or something. I get really frustrated over the food issue too. It is not easy to be gluten free out there! Good luck!

I have been gluten free for 9 years now. Trust me when I say it will get easier. Before going to any restaurant, check their website first. Even fast food joints like Taco Bell and McDonald's and Burger King have gluten free guides online. You would be pleasantly surprised.

Thank you all for the comments. They are actually like encouragement! Some days I feel like I'm all alone with this, until I come on here and see what you have to say to help me. Every little fact I can get helps!

When I first wrote the blog, it had been 3 weeks since I had to do a little hospital visit because I made a few poor decisions and let my temptations take over! But as my doctor drilled it into my head that I can never eat gluten and be okay at the same time, I vowed to change my ways! I have been so much healthier and now I'm starting to get my energy back.

Renee, I am new to this site and celiac disease, new to knowing I have it; finally right doctor - naturopath...then I looked at old pathology report from endoscopy and it was stated 3-2002 that I had celiac after biopsy and no one told me!!! So anyway, believe it or not I am a nutritionist and have no idea on what to eat. Everything I learned now is wrong. I read all the labels, been doing gluten, lactose, and soy free diet since 1-1-10 and I am still bloated and constipated and gained weight..HELLO weight gain..and I am afraid to eat since I have malabsorption so wouldn't you lose weight?? I am very frustrated as everyday I am tired, and same symptoms. Any helpful suggestions? I am now sad like mood swings are paired with this as well. Thanks..I truly appreciate anyone's comments.

Well first off, I'm glad you joined because everyone on here knows exactly what you are going through because we have all been there! A few months before I turned 17 I had my first endoscopy and colonoscopy, they were not fun but they had shown all the damage that I had. But for some reason they never told me exactly what that was from. I later found out I had celiac. Its not easy because you do this diet and you aren't feeling better, your gaining weight and that causes you to become depressed. I was 16 years old when I had those two procedures and I weighed 168l pounds. A year before that I was 120lbs! I know how it feels to not be yourself but after time, you will see the difference.

Right now your body is still fighting because when not on the gluten free diet, your intestines are severely damaged and it becomes harder for you to digest food and actually take in all the nutrients from your food. Think of it as remission, your working to become healthy. Just stick it out, eat healthy, set a goal for yourself to work towards and exercise. You should feel proud of yourself for being healthy!

My blood test was positive and my biopsy was negative. I was told I was gluten sensitive. I, like Connie am bloated and constipated and gained weight. I don't understand this. I asked my doctor and she would just say I need to count my calories, etc. I thought after a while it would get better but after two years on a gluten-free diet, I am still bloated and constipated and have the extra weight. Also, every year on my annual check up my iron levels are low and my doctor puts me on iron pills for three months. My iron goes back up and I go off the pills, then 9 months later at my next check up my iron is down again. I'm very confused and don't understand what I'm doing wrong. If I do inadvertently ingest gluten I get muscle spams in my calves and I become very tearful at the slightest provocation. Is there something else going on? Any suggestions? I've been thinking of trying peppermint oil capsules.

Have you ever had your thyroid checked? I don't know if it would have anything to do with the extra weight, but my mom has had a lot of problems with her's lately and has the same symptoms as you. However, she is negative for celiac and I cook, so everything is gluten free. When she doesn't eat gluten free, she feels awful! I have heard peppermint capsules used for upset stomachs. My grandma used to give them to me when I was younger and it did feel good! It wouldn't hurt to try! Good Luck!

Hi Shirley--I am gluten intolerant, also casein, corn, soy, yeast, & egg intolerant as well. Have been following a diet free from all those proteins and had been doing well...even had a 6-day stretch with normal BM's. Then went to see my son who took me to a restaurant where I could get gluten-free food- WRONG. That started a chain of events that turned my insides up-side-down. I have had a month now of nothing BUT diarrhea and can't seem to get it healed. Fasting only stops the diarrhea temporarily, and eating ANYTHING brings it back--even the strict diet that I follow. I make ALL my food so I know that I am not getting ANY of the things I need to avoid. This stresses me out which doesn't help things. I am interested in your website and support group. Could you give me more info? I need HELP!!!!

Oh boy, have I been in your boat. I have lymphocytic colitis as well, and when it gets triggered the dermatitis herpetiformis is miserable (have you been tested for that?). I had it for six weeks solid once. But I realized that when your gut is inflamed even foods you could eat when you are healthy will make it worse. Fasting helped only a bit. I discovered this meal replacement formula that is gluten and casein free, designed to be used with an inflamed gut, and use rice cereal for babies until things calm down. I also just came across this woman who helps people in your boat: Barbara Nielsen at glutenfreecoach.net. Maybe she can help get you back on track.

(regarding prior comment) The second line should read D H short for diarrhea, but I guess that was the wrong abbreviation! This wasn't about the dermatitis, sorry!

Thanks for the site. I am grateful for a site for people to share their problems and frustrations. I have just found you and will be returning.

Again, THANK YOU!!

Renee,

I would try to find a naturopath who will order a Stool (poop) test to see if you have underlying bacteria, yeast or parasites in your gut. My son could never gain weight until I did the metametrix gastric intestinal stool effects on him through his pediatrician. Sure enough he had a bunch of stuff growing in his gut, parasite, bad bacteria, h pylori, etc. No good bacteria was left even though I was giving him a ton of probiotics and secretory igA (which is your first line of defense on your gut lining) was none existent. We did the 4 R program (google this) to eradicate all the bad stuff and gave him lactobacillus sporogenes to help increase his secretory iga digestive enzymes, lots of glutamine etc. He has gained 20 pounds in 6 months which he desperately needed and is showing signs of puberty very welcome to a 15 yr old boy!

IMHO a poop test is the key to finding out why your gut won't heal. the undiagnosed celiac for years has made your gut vulnerable to a host of bad guys growing there. You need to get them out and heal your gut. you can go to the metametrix website at to find a practitioner near you that uses this test. There are other good labs like, Diagnose-Tech, Genova and Enterolab who also do this. Your typical lab that your general MD uses won't usually pick up everything. Good luck!