Celiac, Severe Bloating, & Eating Disorders

[Guest rosei]

Is anyone struggling with severe bloating & digestive disorders after being gluten-free & allergon-free for a substantial time? I'm trying to distinguish whether the severe chronic bloating & constipation is a result of disordered restrictive eating or from existing medical conditions never properly diagnosed & treated. Pretty much anything I eat or drink causes intense suffering, so to avoid feeling terrible I often starve myself, restrict, try to follow the Specific Carb Diet, but get stuck in a continual eating disorder cycle. I'm looking for cause & treatment info from anyone with similar experiences or knowledge!

[blueangel]

Is anyone struggling with severe bloating & digestive disorders after being gluten-free & allergon-free for a substantial time? I'm trying to distinguish whether the severe chronic bloating & constipation is a result of disordered restrictive eating or from existing medical conditions never properly diagnosed & treated. Pretty much anything I eat or drink causes intense suffering, so to avoid feeling terrible I often starve myself, restrict, try to follow the Specific Carb Diet, but get stuck in a continual eating disorder cycle. I'm looking for cause & treatment info from anyone with similar experiences or knowledge!

Hi Rose,

I am suffering from the same and being glutenfree for about two years, I've seen assoc celiac and told to remove from my diet glutenfree breads, pasta and whatever prepaid foods or drinks even if on my list ( I'm on a svery strict diet ... and basically stick to meat, fish, veggie, fruits basically all natural for at least 6 months and repeat the gastrocopy since the other glutenfree diet was not working. I'm like a yoyo, not feeling well at all, always edgy, nervopus, very tired. Hopefully this diet will work.

Milena (an American in Spain)

[danikali]

Hi,

I don't have any advise on this, but I too am in the same boat, exactly. I've been on the SCD for about two weeks now, and it's scary because I'm Sooooooooooooooooooo sensitive. Everytime I mess up or I have a food that is on the 'safe' list that just doesn't agree with me, I pretty much starve myself the next day too and it's turning into a horrible cycle. I know now that along with carbs, I can't tolerate raw foods or fried foods (ex. I was frying my hamburger pattys). Anyway, I hope it gets better because I feel like this is my last resort. I'm even extremely bloated, constipated and have horrible back and heart burn as I write this. Anyway, let's keep each other posted if either of us figure out an answer.

[jerseyangel]

I went gluten-free in June of last year. After getting the gluten out of all foods and personal care products, de-glutening kitchen, etc. I did pretty well until December. At that time, I began to have reflux and indigestion--which is strange because I had never had that before. Also, some of my D related problems resurfaced. Since then, I found (through trial and error) that I do best when I eat only meat, poultry, veggies, fruits, nuts, olive oil, and dark chocolate. It also helps me not to eat the same things every day. With the exception of salad, I try and vary my meals as much as possible. I find that tea is bothersome, so I stick to pure water, apple juice warmed in microwave w/ cinnamon and once in a while, Knudsen's Natural Soda (fruit juice and carbonated water). Last night, we were craving Italian, so I made homemade meatballs w/sauce and served it with spaghetti squash. It was the first time we tried the squash, and it was really good. There are a lot of things that can be made with naturally gluten-free foods. I would suggest a similar approach to you--perhaps cut the grains first, look at dairy and soy and corn. I hope you get some answers soon

[marciab]

I've been at this 9 months now, and my digestive problems didn't clear up either by only eating "safe" foods and avoiding all trigger foods. I still had the "C", bloating and mild cramping. The severe 911 cramps, acid reflux, constant gas pressure and the "D" were gone though.

I had also eliminated all meats and all processed foods.

I started using EVOO, flax oil and grape seed oil to control my "C". And once the "C" was under control, the bloating and cramping went away.

I haven't seen any studies on the health benefits using oils to control "C", but it is working for me. I only use oils that have omegas in them. And I didn't gain any weight as I am 120 lbs and 5'5".

Right now the only stomach med I use is Beano before most meals, but I am also in the process of wild salmon back into my diet.

Hope this helps. Marcia

[CMCM]

Hi,

I don't have any advise on this, but I too am in the same boat, exactly. I've been on the SCD for about two weeks now, and it's scary because I'm Sooooooooooooooooooo sensitive. Everytime I mess up or I have a food that is on the 'safe' list that just doesn't agree with me, I pretty much starve myself the next day too and it's turning into a horrible cycle. I know now that along with carbs, I can't tolerate raw foods or fried foods (ex. I was frying my hamburger pattys). Anyway, I hope it gets better because I feel like this is my last resort. I'm even extremely bloated, constipated and have horrible back and heart burn as I write this. Anyway, let's keep each other posted if either of us figure out an answer.

\

Dani.....I do my hamburgers on a small George Foreman grill....you don't put any grease at all on the grill, and any fat from the burger drips off. I also buy ground sirloin because the fat content is much much lower. Doing the patty this way doesn't bother me, but frying it would.

[lorka150]

I feel your pain.

For breakfast every day, I can tolerate tangerines, only. Lunch is raw veggies and nut butter, as is dinner. I eat SO many because I am trying to fill up (over these two meals: one whole cabbage, four carrots, two zucchini, about 10 mushrooms, a whole thing of celery, two peppers, half a broccoli, half a cauliflower) and lo-nad behold: bloat city. It's so uncomfy.

But it's that, or sick from all the other foods that make me sick.

So I figure i'll have to deal with bloating.

[Lauren M]

OK, admitting something that's probably too private for a public forum...

Celiac Disease caused me to develop an Eating Disorder. I was not Anorexic, was actually classified as "ED-NOS" (eating disorder not otherwise specified) b/c I didn't WANT to lose weight, but I did restrict my food intake. I dropped to a very scary 78 lbs (on my 5'7" frame) and had to be hospitalized. I can TOTALLY relate to what you're saying - I became afraid to eat, and often feelings of fullness caused me to worry that I had been glutened. Your stomach CAN shrink, meaning you will feel bloated more easily, after restricting for awhile. This is what happened to me.

If you have any other questions feel free to ask me, either here or in a PM. Just wanted to let you know that it's very common for Celiacs to develop forms of disordered eating. It was so hard for me to convince people that I didn't WANT to be that thin- it wasn't about body image, it was about fear of food!

- Lauren

[lorka150]

Hi Lauren,

Congratulations on your strength.

Because of the celiac, I lost a ton of weight, and my lowest was also 78lbs. I am also 5'7''.

Do you mind if I ask what you're at now? How long did it take you to gain it back?

Thanks

[Lauren M]

Hi Lauren,

Congratulations on your strength.

Because of the celiac, I lost a ton of weight, and my lowest was also 78lbs. I am also 5'7''.

Do you mind if I ask what you're at now? How long did it take you to gain it back?

Thanks

I actually had to go into the hospital to have a picc (sp?) line inserted in my arm and was given TPN until I was at a stable weight. I went inpatient at Renfrew, a center for eating disorders, where I learned to tolerate those feelings of fullness and those fears of food. It was very difficult for me, especially since I didn't relate to the body image issues others at Renfrew had associated with gaining weight (I was THRILLED that I was finally gaining!), but it was definitely what I needed at the time. I was eating 3 large meals, 2 snacks and drinking 4 Ensure Pluses every day (of course, they worked me up to that!) I'm currently around 110. It's a fight to keep the weight on, as I naturally have a fast metabolism, but I'm hoping I'll be able to do it. The food phobias have definitely decreased, though I still have some anxiety going out to eat (don't we all!)

- Lauren

[lorka150]

thank you so much for your reply.

110 is great, it's hard, i know.

[Diosa]

I feel your pain.

For breakfast every day, I can tolerate tangerines, only. Lunch is raw veggies and nut butter, as is dinner. I eat SO many because I am trying to fill up (over these two meals: one whole cabbage, four carrots, two zucchini, about 10 mushrooms, a whole thing of celery, two peppers, half a broccoli, half a cauliflower) and lo-nad behold: bloat city. It's so uncomfy.

But it's that, or sick from all the other foods that make me sick.

So I figure i'll have to deal with bloating.

The raw veggies themselves can cause bloating. Especially broccoli. Have you tried Beano? Maybe that might help?

[Deej]

This is a fascinating and timely thread for me. I am struggling with lack of appetite (maybe it is fear of food, I don't know) and horrible bloating.

i have a question: Is Ensure gluten-free?

[Lauren M]

Ensure is absolutely gluten-free as is Boost except the "choclate malt" ones (I forget exactly what it's called, but something obvious like that). I like the Boost puddings! The rest of the supplement drinks sit really heavy in my stomach; I wouldn't drink them if I didn't have to.

Thank you Lorka, I went back and forth about whether I wanted to share my experience in such a public way, but if it helps you or anyone else, I'll be glad that I did.

- Lauren

[Celia the Celiac]

My main sympton of Celiac was major bloating, alot of air going both ways if you know what I mean. What makes it so difficult for me as my stomache is cut, stapled and banded along with the Celiac. When I get bloated, my fear is my stomache exploading or a staple busting or something like that. I don't know if that could happen but I fear it and the intake of food has become an issue. My weight has gone from 310 pounds to 135. I've been in the emergency room three times for dehydration and malnutrition. I have learned thru study that drinking plenty of water works the best for my bloating. It usually takes about two large glasses before I feel better. I take in a certain amount of sea salt with iodine per day also. My body has to hold a certain amount of water so that my organs can work properly. I used to drink water to "flush" but I've learned otherwise. Hope some of this helps.

[lorka150]

I know the veggies cause bloating, but they don't cause brain fog, fatigue, and pain. Everything else does. I'll take the bloating.

[Bonnie]

Is anyone struggling with severe bloating & digestive disorders after being gluten-free & allergon-free for a substantial time? I'm trying to distinguish whether the severe chronic bloating & constipation is a result of disordered restrictive eating or from existing medical conditions never properly diagnosed & treated. Pretty much anything I eat or drink causes intense suffering, so to avoid feeling terrible I often starve myself, restrict, try to follow the Specific Carb Diet, but get stuck in a continual eating disorder cycle. I'm looking for cause & treatment info from anyone with similar experiences or knowledge!

Rose, you could be talking about me! I suffer from chronic constipation to the extent that I don't go - ever. I have to take laxatives every day. If I take something like psyllium I bloat even more than usual and it doesn't work.

I occasionally starve myself just to have a flat stomach. Then I binge for a couple of days, feel sick and awful and so it carries on. I also get totally disgusted with myself when I binge.

I definitely feel a lot better when I stick to fruit, veg and meat but it is so difficult to keep this up. Although eating like this does not help my C.

Every Monday I tell myself I'm starting afresh - eating properly for the whole week but the wheels usually fall off

Yvonne

[key]

Yvonne,

SOrry you are struggling with C. I am doing better all of the sudden after giving up coffee and I have to be sure I am 100% gluten free or it makes me messed up for two weeks.

Also I started taking something called "Bone Up", by Jarrow Formula's and it has helped me SO much. At least I feel this is what it may be. It is working anyway. I bought it for the bone loss from celiac, but it says on the bottle "Reduces Bone-loss and Protects Colorectal Health". I take six a day divided up with meals.

If you don't eat enough too, it can lead to constipation. This may not be your problem, but anorexics have constipation.

Monica

[loraleena]

I have always had a flat stomach no matter what I weighed. Overnight after I went gluten free in July, I am now bloated all the time. Why would I not be bloated while eating gluten, but very bloated since stopping. Enzymes help some. Has anyone dealt with yeast overgrowth and parasites. I heard they can cause this. Has anyone done a colon cleanse? I would like to try this.

[bluejeangirl]

OK, admitting something that's probably too private for a public forum...

Celiac Disease caused me to develop an Eating Disorder. I was not Anorexic, was actually classified as "ED-NOS" (eating disorder not otherwise specified) b/c I didn't WANT to lose weight, but I did restrict my food intake. I dropped to a very scary 78 lbs (on my 5'7" frame) and had to be hospitalized. I can TOTALLY relate to what you're saying - I became afraid to eat, and often feelings of fullness caused me to worry that I had been glutened. Your stomach CAN shrink, meaning you will feel bloated more easily, after restricting for awhile. This is what happened to me.

If you have any other questions feel free to ask me, either here or in a PM. Just wanted to let you know that it's very common for Celiacs to develop forms of disordered eating. It was so hard for me to convince people that I didn't WANT to be that thin- it wasn't about body image, it was about fear of food!

- Lauren

Lauren,

Thanks for sharing your experience. I know I can relate to a lot of things you've said. Food has always made me sick by either eating it or not eating it. I got tired of the doctors and the food diaries etc. I always wished I could just eat a food because it tastes good or because its convenient but for me its always been will this make me sick and will I regret it later. I can get real angry that my health requires me to make everything homemade, planning all of my menu for a week, and spend top dollar on food items. But I love these boards because I find people like you who are going thru the very same things and that makes me feel better.

Gail

[Lauren M]

Lauren,

Thanks for sharing your experience. I know I can relate to a lot of things you've said. Food has always made me sick by either eating it or not eating it. I got tired of the doctors and the food diaries etc. I always wished I could just eat a food because it tastes good or because its convenient but for me its always been will this make me sick and will I regret it later. I can get real angry that my health requires me to make everything homemade, planning all of my menu for a week, and spend top dollar on food items. But I love these boards because I find people like you who are going thru the very same things and that makes me feel better.

Gail

Gail,

I'm so glad you can relate. Through some therapy I've come to realize how food and pain are forever linked in my mind - I also had a severe case of pancreatitis, just before the celiac disease diagnosis. I've really had to challenge that mindset and push myself through some physically and mentally uncomfortable moments, for the sake of my health. In the longrun, I know this is what I need to do.

I agree that the gluten-free lifestyle can be frustrating and at times you feel like you're the only one who has to go through this (I had/have many "WHY ME" moments), so it is refreshing to come to this forum and "chat" with people who know what it's like to spend $7 on a loaf of bread that tastes like styrofoam and to be afraid to eat at a restaurant. Best of luck to you in your struggles, let me know if I can help in any way.

- Lauren

[Carolita]

Loraleena, I just opened a post on Candida Albican (yeast overgrowth). About a year ago I was told I had this and I have been on a yeast free / low carb diet and feeling well, untill almost 3 weeks ago when I had italian food. My celiac disease test came back positive this week and so I'm now on this forum trying to learn all about celiac disease. My post is under pre-diagnosis.

Carol

[Redeemed]

I am sorry so many of you are experiencing bloating issues, but comforted (in a way) that I am not alone in this frustrating struggle. I am 5'10", 155lbs, newly turned 40 year old, mother of 3. I have a small waist, but have always had a bloated lower abdomen. It is so frustrating trying to explain this to a doctor, only to have him tell you that as we age we gain weight in certain places, etc. Grrrr!!

Here are the things that seem to bother me: the sulfites in wine, all types of beans (btw, I think Beano has some form of wheat in it...I remember checking one time b/c I thought that would be my solution), raw onions, broccoli.....that is all I have tracked, so far.

I still struggle with depression, moodiness, low energy. Went to the doctor for my yearly celiac disease follow up visit (been diagnosed for 4 years) and he told me he was NOT going to do the tests Dr. Green recommends in his book, as a follow up! Said they were too expensive to run! I am sort of in limbo right now...just trying to figure this whole thing out by myself...not knowing what step to take, next. I dream of seeing someone like Dr. Green one day...just to make sure I am healing ok, etc.

I might have read this in Dr. Green's book (not sure), but I think it is best for us to eat some type of "naked" diet--in other words, for an ideal diet--no processed foods, no sauces, rich foods, etc. Again, when I eat what I consider to be "naked" foods (broccoli, veggies (raw), I get extremely bloated. I will say, it helps to take an enzyme (or 2) before I eat known offenders. Look into digestive enzymes before you take my word for it. They help me. Overall, though, I always carry around this bloated belly, regardless of how much I excercise or eat properly.

I recently bought a bag of gluten-free oats. In the instructions for cooking, they mention drinking a lot of water after consuming. I am wondering whether or not that might be the problem. Maybe our digestion is slowed, for some reason, and when we eat high fiber foods without drinking adequate amounts of water, it somehow produces the bloating and gas. I am in no way a doctor, just a thought I had. Hmmmm.....

I am hoping Celiac research uncovers more answers for many of us who suffer in so many ways from this disease. I wish you all the best!

Rachel

[burdee]

Is anyone struggling with severe bloating & digestive disorders after being gluten-free & allergon-free for a substantial time? I'm trying to distinguish whether the severe chronic bloating & constipation is a result of disordered restrictive eating or from existing medical conditions never properly diagnosed & treated. Pretty much anything I eat or drink causes intense suffering, so to avoid feeling terrible I often starve myself, restrict, try to follow the Specific Carb Diet, but get stuck in a continual eating disorder cycle. I'm looking for cause & treatment info from anyone with similar experiences or knowledge!

Even after diagnoses of celiac and casein intolerance/allergy and abstaining from gluten and dairy, I still had bloating and constipation. During the next 2 years I was also diagnosed with allergies to soy, egg, cane sugar, vanilla and nutmeg and a Klebsiella bacterial infection. After abstaining from all my diagnosed allergies, treating the klebsiella and taking probiotics I STILL had bloating and constipation. During the next 4 years I was diagnosed (by stool test) and treated for 4 more bacterial infections, candida and 2 parasitic infections.

Treating for all those gut bugs did not completely resolve my constipation. I took daily magnesium supplements, which kept me regular, but I still had hard stools. Taking vancomycin for c-diff did give me temporary antibiotic induced diarrhea, which freed me from constipation, but only during treatment.

I recently began taking very high dose probiotics (50 billion good bacteria per capsule) on an empty stomach first thing in the morning and/or before bed. Despite continuing to battle a parasitic infection (dientamoeba fragilis), taking those probiotics completely resolved my constipation. No matter how much fiber or liquids I consume, I still have soft, regular stools.

However, the bloating continued, especially after meals, until I after I was diagnosed with hypochloridia (low stomach acid) through a Heidelberg capsule test (measures stomach acid production). So I began taking HCl capsules with meals. For the first time in my life I didn't get bloated after every meal.

However, I'm now taking an antiparasitic drug which is very abrasive to my stomach. So I can't take HCl capsules while taking that drug and the bloating is back, at least until I finish this treatment and can resume taking HCl supplements.

[EMB]

Lauren - I am struggling with recovering from much of what you describe. Self diagnosed Orthorexia. I got down to 80 lbs. Finally, cognitive problems and confusion along with heart palpatations freaked me out and I started trying to eat again. You are right....I was SCARED of food!

I am trying to eat more now, but I think my stomach truly has shrunk.

I need to talk to someone about this.....are you still actively posting here? Can I talk to you about it? Does this ever get better!? Eating is still so painful!

Thanks,

Erin

I actually had to go into the hospital to have a picc (sp?) line inserted in my arm and was given TPN until I was at a stable weight. I went inpatient at Renfrew, a center for eating disorders, where I learned to tolerate those feelings of fullness and those fears of food. It was very difficult for me, especially since I didn't relate to the body image issues others at Renfrew had associated with gaining weight (I was THRILLED that I was finally gaining!), but it was definitely what I needed at the time. I was eating 3 large meals, 2 snacks and drinking 4 Ensure Pluses every day (of course, they worked me up to that!) I'm currently around 110. It's a fight to keep the weight on, as I naturally have a fast metabolism, but I'm hoping I'll be able to do it. The food phobias have definitely decreased, though I still have some anxiety going out to eat (don't we all!)

- Lauren