When Gluten Free Is Not Enough

[ksymonds84]

I've been seeing quite a few posts related to not getting better on the gluten free diet and wanted to tell my experience to give some hope. I'm into my 3rd year gluten free now. The first 3 months I had big improvements (I lost quite a bit of weight from having daily diarrhea) but still had problems so I eliminated dairy and for the next 9 months did even better but still had days of unexplained big D blowouts. I kept a food journal but it didn't make since that I was okay with something one day and not the next. Reading this forum showed me that some people had problems with soy so I thought I would be tested with soy. I used enterolab and just went ahead and did the gluten, casein, soy, malabsorption ect even though I already had a gluten intolerant diagnoses from my general practictioner and later after a miserable gluten challenge a positive biopsy, to see if I still showed antibodies. I did but very low (14 when their positive is 10, I had been almost 2 years gluten free)and almost normal malabsorption. Casein was very negative. Soy tested high so I asked my Gastro doctor and he said go ahead and remove it and see. Again, it helped but STILL had unexplained episodes of big D.

My brother in law who is also celiac (positive biopsy and positive Herpetiformis Dermititis biopsy)told me that his doctor believes he has a problem with fructose malabsorption and that it sometimes overlaps with celiac. I did some digging on FM and it was like a light bulb going off! I went on a low fructose diet also including fructans (onions,artichokes, asparagus ect) and now I'm 99% better! FM is not like celiac to where I can never have fruit, honey, ect every again or worry about cross contamination, its all about personal threshold and how much per sitting. Some with FM have severely low threshold for fructose. Lucky for me, I just have to be careful with how much fructose I have at one sitting and never within 3 hours apart. Also, I've found onions to be my enemy but still cook with them for flavor then don't eat the flesh where the fructose resides.

In a nut shell if you are still not doing any better after being strictly gluten free for a few months or more, keep digging. Dairy, soy, and fructose seem to be the most common intolerances but everyone is different and could react to nightshades, corn ect. Happy healing!

[srall]

I did a lot of research on FM when I was first figuring this whole puzzle out. Because it seems it's rarely just gluten making us sick. I haven't really followed a diet for FM but I definitely watch the fructose intake. It makes a huge difference. Weirdly, I cannot eat rasberries without almost a "gluten" response, and they are supposed to be relatively safe glucose to fructose ratio (if I'm remembering correctly.)

Anyhow, glad you're figuring that out. It sure is a process to get to feeling healthy, isn't it?

[gf-soph]

I totally agree with you - following the fructose and general FODMAP guidelines has been extremely helpful for me, especially in reducing bloating and normalising my gut function. It's amazing how quickly and massively I bloated up when I had my first high fructose foods after being on an elimination diet!

If you're having a problem with raspberries, you might be interested to know that most berries, including raspberries, are very high in both salicylates and amines. They're chemicals that are found in a lot of foods, but sometimes eating a serving very high in the chemicals is enough to go over your tolerance, and create a reaction. Google RPA elimination diet or failsafe if you're interested.

[elk]

Thank you for sharing that. I'm going to look into FM now. I hope that's not me because I love onions adn I eat a lot of fruit (mainly apples and mangos) because everything else seems to trigger migraines. I think grapes just did me in.

[BenVenit]

I find I could never eat the "Gluten Free diet" that is so in vogue right now for that very reason. It is loaded with other stuff. The narrower my diet the better. It is so bad that I have gotten the DX of MCS. I think that it is just that some of us are way more sensitive to all the garbage they are putting into everything. I am Rh - blood if that makes a difference.

I can only eat like 5 foods: Brown rice, rice cakes, veggies -only leafy greens, carrots, and celery. Tried a pepper for goodness sake and reacted! I can eat garlic and ginger. But no onions. I can eat beets sometimes. Fish and sometime eggs. No soy.

I use a lot of supplements because of this narrow diet but I have to be SO careful. I went to live in another place and could not get my usual ones. I only get the ones that have NO EXTRA ingredients. Well, the place I went only sold ones will lots of fillers that sounded benign. WRONG! Oh I got sick!

I also have to be careful about things like toothpaste. I use natural ones but have to use flouride occasionally. I Know that is a heated topic and I am very informed. But I use it once in a while.

Shampoo is Jason or other natural one. Soap I try to use green friendly.

But I am really getting slammed right now for some reason. I can't think what it is. But I am so stiff and in so much pain.

[ksymonds84]

I totally agree with you - following the fructose and general FODMAP guidelines has been extremely helpful for me, especially in reducing bloating and normalising my gut function. It's amazing how quickly and massively I bloated up when I had my first high fructose foods after being on an elimination diet!

If you're having a problem with raspberries, you might be interested to know that most berries, including raspberries, are very high in both salicylates and amines. They're chemicals that are found in a lot of foods, but sometimes eating a serving very high in the chemicals is enough to go over your tolerance, and create a reaction. Google RPA elimination diet or failsafe if you're interested.

I agree on you with the bloat. Going low fructose made my stomach pretty much flat again especially the area just below the rib cage, I had a little shelf so to speak. When I accidentally eat gluten or high fructose, I puff up big time and look prego since I'm thin everywhere else. I have heard of the RPA diet, many on my fructose malabsorption group are having great success with it!

[ksymonds84]

Benvinit,

Sorry you are in so much pain. How long have you been gluten free? I hope that you can someday add more whole foods to your diet again. ~hugs~

[jackay]

It really is a puzzle trying to figure what is making us ill. I have been trying to do that my entire adult life. Now I know gluten is my biggest enemy but there is so much more. It seems like MISSION IMPOSSIBLE to figure out what else it is! Is it cc, dairy, soy, eggs, fish, FM, a group of foods or particular foods, candida, pesticides, mold, etc. And if it is just cc, where in the blazes is it coming from?

[T.H.]

I can only eat like 5 foods: Brown rice, rice cakes, veggies -only leafy greens, carrots, and celery. Tried a pepper for goodness sake and reacted! I can eat garlic and ginger. But no onions. I can eat beets sometimes. Fish and sometime eggs. No soy.

Oh, you so have my sympathy! I have been on a diet of 7 foods for about a year, myself. Mine was bison meat (only from one company), amaranth, quinoa, avocado, sweet potato, sea weed, and sea salt. I sometimes tried a new food, maybe it would work for a few days or a week or so, and then I'd start reacting and back to the staples again. Just within the last few weeks I've been able to start adding back in other foods, though, and it's been very wonderful.

Hoping you don't mind a few questions/comments. Just trying to see if anything I've been going through might help you, too, ya know?

1. Do you have iodized salt in your diet? That ended up being one of my issues when I was trying to figure out what was wrong. I turned out to be very reactive to corn, and there is corn in all iodized salt, which of course I ate every day. I thought I'd mention it because one of the symptoms I get with corn is aching joints. And it seems to make my reactions to other foods much, much worse when I ingest it. Once I finally got off the corn, things improved. But I had to go to a few corn allergy websites to find all the hidden corn in my diet.

2. Do you garden? That has helped me immeasurably. I seem to have lots of trouble with fruits and veggies and meats and all too - very few test positive to allergy tests, but I get very sick off of them anyway. After a year of this, for the first time, I actually gardened. I bought organic soil, with no additives, and bought organic seeds, and used totally natural ways of keeping pests away, like planting onions near the plants, and physical barriers for the rabbits, and so on. So far, it's been amazing. Foods that I reacted to when I bought them in the store - even organic produce - I have been able to eat when I've grown them myself. I know there are many people that this doesn't apply to - those with fructose malabsorption, obviously, but if you react strongly to chemicals or possibly even whatever people have on their hands when they are handling produce, perhaps getting some food that you've grown might help you out?

3. Have you tried some of the exotic foods that you might not normally eat? That's how I ended up with buffalo meat. Maybe there would be something in the foreign that could add something tasty to the diet, yeah?

4. Another thing I've now done that has helped is to get in touch with our local 'edible plant' guy. He's a botanist in the area who gives talks on what native plants one can forage in the area. So far, many of them seem to be okay to my system as well, as long as I find some that aren't by houses or construction, etc... Maybe there is something like that by you, too?

5. Do you buy organic produce? My GI doc has all his celiac patients go organic so they avoid genetically modified foods. One reason is that he says that more celiacs seem to react to these, and on top of that, studies on animals are showing that when they eat genetically modified foods, they start developing allergies to OTHER foods that are related. Perhaps that might help, if you haven't done that yet?

6. Have you been checked for parasites? Many are affected by food, and if they multiply or die off because of your food intake, they can cause systemic reactions. If they've never checked, might be worth doing a little research to see if your symptoms match anything.

Wishing you good luck, from someone who TOTALLY understands eating the same food over and over and over. Just being able to get a new taste is like Nirvahna, yes?

[willabec]

I've been seeing quite a few posts related to not getting better on the gluten free diet and wanted to tell my experience to give some hope. I'm into my 3rd year gluten free now. The first 3 months I had big improvements (I lost quite a bit of weight from having daily diarrhea) but still had problems so I eliminated dairy and for the next 9 months did even better but still had days of unexplained big D blowouts. I kept a food journal but it didn't make since that I was okay with something one day and not the next. Reading this forum showed me that some people had problems with soy so I thought I would be tested with soy. I used enterolab and just went ahead and did the gluten, casein, soy, malabsorption ect even though I already had a gluten intolerant diagnoses from my general practictioner and later after a miserable gluten challenge a positive biopsy, to see if I still showed antibodies. I did but very low (14 when their positive is 10, I had been almost 2 years gluten free)and almost normal malabsorption. Casein was very negative. Soy tested high so I asked my Gastro doctor and he said go ahead and remove it and see. Again, it helped but STILL had unexplained episodes of big D.

My brother in law who is also celiac (positive biopsy and positive Herpetiformis Dermititis biopsy)told me that his doctor believes he has a problem with fructose malabsorption and that it sometimes overlaps with celiac. I did some digging on FM and it was like a light bulb going off! I went on a low fructose diet also including fructans (onions,artichokes, asparagus ect) and now I'm 99% better! FM is not like celiac to where I can never have fruit, honey, ect every again or worry about cross contamination, its all about personal threshold and how much per sitting. Some with FM have severely low threshold for fructose. Lucky for me, I just have to be careful with how much fructose I have at one sitting and never within 3 hours apart. Also, I've found onions to be my enemy but still cook with them for flavor then don't eat the flesh where the fructose resides.

In a nut shell if you are still not doing any better after being strictly gluten free for a few months or more, keep digging. Dairy, soy, and fructose seem to be the most common intolerances but everyone is different and could react to nightshades, corn ect. Happy healing!

that's me! i have been gluten-free for 8 1/2 yrs. and for the past 1-2 years (could be longer i just don't remember) things seem to have gotten worse. had a stool sample, came back with a little more fat than usual. dr. thought a pancreatic insufficiency. took a supplement and it helped fora little while but then seemed to stop. i mentioned FM to him prior to all of this and he said that being gluten-free has enough restrictions that i should not try that. my frustation lies in the fact that my bowels are good in the a.m. and after dinner but after lunch (about 90% of the time) i end up in the bathroom -maybe once but maybe 3-4 times. i feel it is a dietary/digestive issue. if it is FM i would not know where to start to see if that diet will help. any helpful suggestions? thanks.

[gf-soph]

There are a couple of posts here already about FM that might help. There is a great yahoo group that you could ask to join. Not only is it an acitve and helpful group, but they have a file section where people have uploaded the most recent guidelines handed out by dieticians in the know. It would be the single best place to start that I can think of.

Try keeping a food diary as well, it can be very helpful in spotting patterns.

[ksymonds84]

There are a couple of posts here already about FM that might help. There is a great yahoo group that you could ask to join. Not only is it an acitve and helpful group, but they have a file section where people have uploaded the most recent guidelines handed out by dieticians in the know. It would be the single best place to start that I can think of.

Try keeping a food diary as well, it can be very helpful in spotting patterns.

I agree that the Australian based Yahoo group is a great tool for learning about FM. I don't find my diet all that much more restrictive because for me, I am not a fruit person and fruit is my biggest culprit. No one needs high fructose corn syrup. Heinz and Hunts have just recently come out with no HFCS which is awesome! Regular old cane sugar in moderation is not a problem for me its just all those franken sweeteners that we really don't need.

[ksymonds84]

that's me! i have been gluten-free for 8 1/2 yrs. and for the past 1-2 years (could be longer i just don't remember) things seem to have gotten worse. had a stool sample, came back with a little more fat than usual. dr. thought a pancreatic insufficiency. took a supplement and it helped fora little while but then seemed to stop. i mentioned FM to him prior to all of this and he said that being gluten-free has enough restrictions that i should not try that. my frustation lies in the fact that my bowels are good in the a.m. and after dinner but after lunch (about 90% of the time) i end up in the bathroom -maybe once but maybe 3-4 times. i feel it is a dietary/digestive issue. if it is FM i would not know where to start to see if that diet will help. any helpful suggestions? thanks.

Willabec, the thing with FM is that it is not so restrictive as Celiac. You don't have to worry about cross contamination ect. Also there are no two FM'ers that are alike. We each have our own level of intolerances to fructose and fructans (onions, asparagus, garlic, artichokes, wheat are examples). Some only have problems with fructose where others have problems with both fructans and fructose. Some can eat small portions of fructose per sitting and at least 3 hours apart, some have to totally eliminate onions and garlic (fructans) where I can have a very tiny portion per sitting and garlic doesn't bother me at all. I can only do very tiny amounts of honey, molasses, High Fructose Corn Syrup, Corn syrup solids, apples, pears, ect and usually only once a day. Honey, I rarely do because more than a tsp and i have cramping. Apples and Pears just a bite but I really don't care about fruit so its not a problem. My mother in law forgot about my FM and bought me a gluten free apple pie. Luckily my husband is gluten free as well now so I just took a couple of bites and he ate the rest and I was fine. As I said in the other post the yahoo fructose malabsorption group is a great learning tool and also just google fructose malabsorption and you will get a ton of hits to get you started. Also feel free to privately pm me if you would like.

[CarolinaKip]

I'm going into my fifth month gluten-free and still have days of great pain. Side paain and pain in the lower middle of my back.I don't eat breakfast anymore to limit the pain and bloating. I have just a few foods as well. I seem to be able to eat jasmine rice, cauliflower, green frozen peas,fish and shrimp with low pain. I am now having a difficult time finding fish that does not have anything added to it. I used to get wonder carolina shrimp until they stopped getting it beacuse they are shipping it to the gulf. (so I was told) Sometimes a few green grapes. Chicken seems to bring more pain. I buy organic and try to be careful to the point of being OCD. I'm looking forward to going to the docor this month, but worried he will say I just need to heal. That is what the PA told me. I'm concerned I'm cc myself alittle at home and at work.

[GFinDC]

I find I could never eat the "Gluten Free diet" that is so in vogue right now for that very reason. It is loaded with other stuff. The narrower my diet the better. It is so bad that I have gotten the DX of MCS. I think that it is just that some of us are way more sensitive to all the garbage they are putting into everything. I am Rh - blood if that makes a difference.

I can only eat like 5 foods: Brown rice, rice cakes, veggies -only leafy greens, carrots, and celery. Tried a pepper for goodness sake and reacted! I can eat garlic and ginger. But no onions. I can eat beets sometimes. Fish and sometime eggs. No soy.

I use a lot of supplements because of this narrow diet but I have to be SO careful. I went to live in another place and could not get my usual ones. I only get the ones that have NO EXTRA ingredients. Well, the place I went only sold ones will lots of fillers that sounded benign. WRONG! Oh I got sick!

I also have to be careful about things like toothpaste. I use natural ones but have to use flouride occasionally. I Know that is a heated topic and I am very informed. But I use it once in a while.

Shampoo is Jason or other natural one. Soap I try to use green friendly.

But I am really getting slammed right now for some reason. I can't think what it is. But I am so stiff and in so much pain.

Hi BenVenit

Peppers are nightshades and could be a problem for you. I don't eat peppers, tomatoes, potatoes or eggplants as they are all nightshades and do a number on me.

Rice cakes you have to be careful of the brand. Lundberg rice cakes seem to work for people here, but Quaker not so much.

I can't do carrots or turnips, not sure if they are connected somehow. I also avoid food colorings and preservatives as I react to some of them. Seems like we share some intolerances. I tend to get Solgar brand vitamins, they are good about labeling for allergens.

[kpryan]

I def find that apples and honey big time bother me...and they have very high levels of fructose. There's a lot of research in Australia about fructose intolerance...I actually have a cookbook from an Aussie nurse that is quite good.

It's so frustrating though....feels like you can't eat much of anything.

[ksymonds84]

I def find that apples and honey big time bother me...and they have very high levels of fructose. There's a lot of research in Australia about fructose intolerance...I actually have a cookbook from an Aussie nurse that is quite good.

It's so frustrating though....feels like you can't eat much of anything.

I know what you mean, the Australians are way ahead of the U.S. in research on Fructmal and I'm glad that they are because they are helping so many people. I was relieved to find out that fructose was a problem in addition to gluten because before I was going crazy trying to figure it out. With fructose being an individual tolerance load, some days I would eat below my threshold of say tomatoes but the next go over board and get symptoms. That made it very hard to pinpoint that tomatoes (I always treat now as a fruit) was my problem. I can eat up to 1/2 a tomato a day. If I want to do spaghetti for dinner, I have to be good all day with fructose and go very light with the tomato sauce adding more mushrooms and other safe veggies to keep the fructose down. I also eat a roll of smarties after wards just in case to balance out the glucose/fructose load and I'm usually fine. Its just a little more preparing but worth it.

Its very rare be unable to eat any fructose at all (this is where fructmal is different from Hereditary fructose intolerance) its just finding that threshold that your body can handle. I just found out this weekend that I can't have stuffed peppers using enchilada sauce at lunch (a small one at that) and pizza (very light sauce) for dinner even with the smarties! I can usually handle 2 good sized pieces of pizza with tomato sauce that only uses cane sugar for dinner as long as breakfast and lunch barely had any fructose. I realize that even this is too much of a load for some fructmals as we are all different.

Also, I heard that Sue Shephard just released her new list and she's added brown rice (where before only white rice) to the list and others, so worth checking out!

[VitaminDGirl]

Oh, you so have my sympathy! I have been on a diet of 7 foods for about a year, myself. Mine was bison meat (only from one company), amaranth, quinoa, avocado, sweet potato, sea weed, and sea salt. I sometimes tried a new food, maybe it would work for a few days or a week or so, and then I'd start reacting and back to the staples again. Just within the last few weeks I've been able to start adding back in other foods, though, and it's been very wonderful.

Hoping you don't mind a few questions/comments. Just trying to see if anything I've been going through might help you, too, ya know?

1. Do you have iodized salt in your diet? That ended up being one of my issues when I was trying to figure out what was wrong. I turned out to be very reactive to corn, and there is corn in all iodized salt, which of course I ate every day. I thought I'd mention it because one of the symptoms I get with corn is aching joints. And it seems to make my reactions to other foods much, much worse when I ingest it. Once I finally got off the corn, things improved. But I had to go to a few corn allergy websites to find all the hidden corn in my diet.

2. Do you garden? That has helped me immeasurably. I seem to have lots of trouble with fruits and veggies and meats and all too - very few test positive to allergy tests, but I get very sick off of them anyway. After a year of this, for the first time, I actually gardened. I bought organic soil, with no additives, and bought organic seeds, and used totally natural ways of keeping pests away, like planting onions near the plants, and physical barriers for the rabbits, and so on. So far, it's been amazing. Foods that I reacted to when I bought them in the store - even organic produce - I have been able to eat when I've grown them myself. I know there are many people that this doesn't apply to - those with fructose malabsorption, obviously, but if you react strongly to chemicals or possibly even whatever people have on their hands when they are handling produce, perhaps getting some food that you've grown might help you out?

3. Have you tried some of the exotic foods that you might not normally eat? That's how I ended up with buffalo meat. Maybe there would be something in the foreign that could add something tasty to the diet, yeah?

4. Another thing I've now done that has helped is to get in touch with our local 'edible plant' guy. He's a botanist in the area who gives talks on what native plants one can forage in the area. So far, many of them seem to be okay to my system as well, as long as I find some that aren't by houses or construction, etc... Maybe there is something like that by you, too?

5. Do you buy organic produce? My GI doc has all his celiac patients go organic so they avoid genetically modified foods. One reason is that he says that more celiacs seem to react to these, and on top of that, studies on animals are showing that when they eat genetically modified foods, they start developing allergies to OTHER foods that are related. Perhaps that might help, if you haven't done that yet?

6. Have you been checked for parasites? Many are affected by food, and if they multiply or die off because of your food intake, they can cause systemic reactions. If they've never checked, might be worth doing a little research to see if your symptoms match anything.

Wishing you good luck, from someone who TOTALLY understands eating the same food over and over and over. Just being able to get a new taste is like Nirvahna, yes?

Very informative reply, Shauna--thank you! I am storing up your info for later.

[Gutsy Girl]

Hi folks. I'm in the group of folks who are 100% adhering to the gluten free diet (last time I had cc was Jan 15, 2010 - very sick for 4 months), and who feels better for being GFD but still far from "good" or "great".

Here's some info I was sharing with a friend who is helping me develop a more nutritious diet.

Open Original Shared Link

This was an enlightening article. I suspect I fall into this group of folks - the strict GFD (gluten free diet) treated Celiacs who still have diarrhea despite the strictest adherence to the diet. Statistics say that up to 30% of treated Celiacs can fall into this category. You feel better because you're gluten free, but yet you don't feel like the "new you" that all the other Celiacs experienced when they woke up one magical morning to a renewed body full of energy. (How depressing to go to Celiac support groups and find you're the sickest person there!) Hey....if enzyme supplementation is more helpful than I thought, then I should really be better about taking enzymes at every meal. Perhaps the enzymes, mixed with my probiotics, would be the ticket to less diarrhea and GI discomfort, bloating, and gut pain.

As you can see here (posted link to this here topic), there are a lot of others like me who are desperately cutting foods out of their diets right and left, trying to figure out what they are reacting to so they can decrease pain and bloating and the "Big D". I call this group of Celiacs the "Underground". Oftentimes you do have to dig to find them on the forums and online communities just as you have to get to know quite a few Celiacs before you meet the ones who are still silently suffering despite doing everything that the doctor told them to and then some. But these are my people and they're the ones that KNOW A LOT about the GI system (more than my GI doctor does!). They work together on these forums with posts like this one to help each other and help themselves. Without the "Underground," I don't know what I would do."

So...thank you, everyone here, for working together to make life better for yourselves and the rest of us. I appreciate you and your ideas. I'm afraid of taking more out of my diet - scared silly, actually - but I appreciate the support and info I can find here. THANK YOU!

Sarah