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Gluten-Free Frustration!

I know I have been following this diet for 2 years now, but it still seems like it hasn't been any easier to follow. I still have the  temptations, cravings and I feel like there is nothing for me to eat. My doctor has told me to stay away from greens and the gluten because not only do I have celiac disease, but I now have IBS. They go great together!
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(sarcasm) Some days I feel like there is nothing for me to eat. I am the only one in my family that has to follow this diet and they never quite understand how to cook for me. So for this past holiday I ended up with some olives, pickles, turkey and mashed potatoes! I guess I don't have to worry about that 5 lbs over the holidays!

Though I know it sounds like I'm complaining, I just wonder how do you go about repeatedly telling a person what you can and cannot eat with out getting so frustrated every time? The worst is when you have to go through a fast food place and they look at you like your crazy because you say "Sorry there is nothing for me to eat here!." I guess Celiac disease has more to it then not only being able to eat much! Frustration...

As always, Celiac.com welcomes your comments (see below).


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17 Responses:

 
Shirley Braden

said this on
17 Jan 2010 12:41:02 PM PDT
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 gf foods to do it or foods easily made gf. I lead a support group and have a website incorporating this approach. It makes life so much easier and you do heal.

 
renee hoak

said this on
22 Jan 2010 4:11:51 PM PDT
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?

 
Linda Krone

said this on
23 Mar 2010 8:18:25 AM PDT
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!!!!

 
Julia

said this on
29 Mar 2010 12:30:30 PM PDT
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.

 
Julia

said this on
29 Mar 2010 7:02:32 PM PDT
(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!

 
Linda S

said this on
18 Jan 2010 6:50:59 AM PDT
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."

 
dotslady

said this on
18 Jan 2010 10:43:25 AM PDT
Have you tried taking probiotics? Have you looked into SIBO (small intestinal bacteria overgrowth)?

 
renee hoak

said this on
22 Jan 2010 4:14:35 PM PDT
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!

 
Jessica

said this on
24 Jan 2010 4:53:35 PM PDT
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!

 
jmdjr

said this on
31 Jan 2010 8:23:19 PM PDT
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.

 
Renee
( Author)
said this on
09 Feb 2010 9:16:15 PM PDT
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.

 
Connie Pridgen

said this on
26 Feb 2010 2:06:37 PM PDT
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.

 
Renee

said this on
02 Mar 2010 8:11:06 PM PDT
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!

 
June

said this on
04 Mar 2010 10:45:02 AM PDT
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.

 
Renee

said this on
08 Mar 2010 6:36:47 PM PDT
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!

 
russell

said this on
05 Apr 2010 1:14:05 AM PDT
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!!

 
Maureen

said this on
11 Apr 2010 8:42:56 PM PDT
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!




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Thank you so much. 8-12 weeks! Oh my goodness, I don't think I can do that. I think going gluten-free made my body's defenses go down or something. I felt bad before, but reintroducing it was completely awful! I still feel queezy a few days later. Let's pray it just comes back positive. lol

Thanks for the feedback! Gemini you're very right - surgery was a totally weird recommendation. My current doctor treated me without hormones because my TSH levels are normal. The doctor found that my Vitamin D levels were severely low and put me on a high dose. They climbed just out of the deficient range. I am very active and frequently outdoors, and they still only climb out of deficient If i'm on intensive VIitamin D supplementation. - In addition, She also suggested I a modified lower carb diet (I'm at a healthy weight, there was no reduction in calories, just an increase in protein and fat and a reduction in carbs, a low reduction, slightly above the recommendations for a diabetic), which the doctor recommended for PCOS. Both of these coincided correlated with a slight reduction in the anti-thyroid antibodies and a slight reduction in nodule size. My TSH levels have remained stable, so it was incorrect to say function, really just a reduction in the level of attack (but the thyroid levels are still high). The doctor that recommended surgery did so because "you're about to start college and you won't have time for monitoring, it will eventually fail. If we remove it now, you can just go on Synthroid and you'll never have to deal with the levels being out of whack." Yeah.... I was 18 then.... I'm now 27, but my Mom just went "NOPE!" and got a second opinion. This person was fine, but all he did was monitor to make sure the TSH levels stayed ok. They did, I just have a goiter and several nodules. The most recent endo. I've seen, who put me on intensive Vitamin D therapy and worked with me on the diet, felt like she was thorough (again minus completely dismissing the first celiac results. I think the D supplementation and diet were associated with a decrease (but obviously didn't and really couldn't reverse the outcome of the disease) in antibodies and nodule size because my TSH levels have yet to get out of whack. I also wonder if with fewer carbs, I ate less (thought still too much If I'm celiac) gluten, and that could have been more a factor in the correlation. Gemini- I'm glad that you have found a good treatment that keeps your levels where they need to be! I also really appreciate the welcome. Update: I have a referral to a GI specialist! I don't want to have Celiac... I love to travel, and I'm very social. I live in the US but my family is from Uruguay, South America, so I carry this Latin Cultural thing about loving to share food and seeing it as such a huge part of hospitality and community. I know that food in social settings gets hard to navigate...But I feel a sense of relief to think that I might have an answer to other health questions and that there is a way that I can stop or at least slow damage.

These can be sourced from various ingredients one being wheat. Please check with the manufacture of your products to figure out if they contain gluten or how they are made....and yes gluten in your makeup, and especially lotion, shower gel, etc is a huge issues. Consider this, gluten contamination can happen from gluten protein residue. How often would you touch your arms, hair, etc or use your hands and touch your food, plate, fork, spoon before putting it in your mouth? Do you bite your nails, sometimes pick up a mint or gum? Hate to say it this way but if you use gluten containing stuff like that shit will happen with cross contamination. Consider changing over to a dedicated gluten-free version of hygiene products and save your self the drama. I use EO products, The Seaweed Co, Savvy Naturals, Hugo Naturals, and Vaseline products products without issues personally.

I had an enlarged thyroid, but no nodules. Dr felt it and ultrasound confirmed. I had so many symptoms of hypothyroid- weight gain, fatigue, hoarse voice-couldn't yell or sing or swallow (still can't swallow, but mostly at the bottom end. Used to not be able to get it past my neck, either) brain fog so that I couldn't form a complete sentence or respond with any timeliness, cold all the time, etc. Dr was in his 70's and old school. He didn't do any further blood tests or anything. Just said to take iodine. So, I started taking iodine. By the next year, different dr, all my thyroid tests came back normal, it wasn't enlarged anymore and most of my symptoms were very much improved. Read "Iodine: Why you need it and can't live without it" Kinda boring and repetitive, but good info. Iodine Crisis by Lynne Farrow is also really good. (She talks more about breast cancer than thyroid. But, the iodine information & history is great.) https://www.amazon.com/Iodine-Need-Cant-Live-Without/dp/0966088239/ref=sr_1_1?ie=UTF8&qid=1493386200&sr=8-1&keywords=dr+brownstein+iodine+book

Ok can anyone please shed light on this subject! I been reading conflicting information. Do I really need to be concerned about products that contain these two ingredients in them like my face products and my body lotions and shower gels? If I'm not ingesting them can they really hurt me? Only been diagnosed for three weeks with celiac and I'm trying so hard to follow the guidelines but this seems to be a gray area. I also check on the list of unsafe ingredients and I don't see them listed there so whats the scoop? Safe or unsafe please help!!!!