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Walter S

Gluten Free Sometimes Makes Me Feel Even Worse

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Hi all, it's been a long time since I have posted, but I hope everyone is doing well on the site. I have been coping with a lot of stress- depression and anxiety lately and I was getting some intense help for that. I have a question/concern though. Lately I have had a problem eating gluten free products. Here is the thing- sometimes I will eat thigs that have gluten and my stomach will be okay, the only symptoms I will get are the brain fog and exhaustion which are not good of course, but it beats having an upset stomach. The reason I have been doing this is becasue not too long ago, when I was eating gluten free bread products (bagels, etc.) I would get intense severe painful cramping diarrhea afterwards! I felt better sometimes stomachwise when I just ate regular bread products. So, I do not know what to make out of that. Sorry to be so graphic here, but as an example, I had a sesame bagel that was gluten free one day and with in a short time after eating it, I had an awful diarrhea attack that was simply terrible AND the toilet was filled with sesame seeds (way more than I could have possibly even eaten) So, that is what confused me. AGain sorry for the gros details but I am scared and concerned. I evenb have had some blood and mucus in the diarrhea after eating gluten free products. Now, I had a colonoscopy done and they did a small bowel biopsy last Spring and the doctor then diagnosed me with Celiac Disease, si I assume it is accurate. What could be going on with me? I am thinking of starting and trying the elimination diet next week after my birthday passes. I don't want to miss out on some good food on my birthday. Please post ANY suggestion, ideas, or possible explanationss you might have. Thanks in advance!

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I would look into food allergy testing. Or keep a food log and see if you can match a food to problems. Can you tolerate nuts ok? Sesame seeds are sometimes a problem for people with nut allergies.

I used to be intolerant/allergic to quite a few foods. (Couldn't afford a real test at the time.) One bite and I would vomit or pass out and then have a great brain fog. It was horrible. But when I avoided the foods I felt considerably better. Years later most of the foods are ok now. I attribute some of the problems to undiagnosed Celiacs.

If you have the biopsy proven Celiacs, I would really try to go 100% gluten-free. Why not try no processed foods for a week and see how you feel? Skip all the breads and easy foods. It is hard, but you might start to feel better. Then when you have started to heal up, add foods in one at a time. That should be an easy way to see if a food is bothering you.

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With Crohn's, at least some doctors recommend a yeast-free diet. I have seen at least one study of Crohn's patients doing better when they avoid yeast. Many Crohn's patients have antibodies to dietary yeast.

Of course, it could be some other ingredient in these gluten-free products that bother you. If you checked the ingredients list you may be able to narrow it down. There is no way the absence of gluten could hurt you unless you were still in the withdrawal stage.


McDougall diet (low fat vegan) since 6/00

Gluten free since 1/6/07

Soy free and completely casein and egg free since 2/15/07

Yeast free, on and off, since 3/1/07 -- I can't notice any difference one way or the other

Enterolab results -- 2/15/07

Fecal Antigliladin IgA 140 (Normal Range <10 units)

Fecal Antitissue Transglutaminase IgA 50 (Normal Range <10 units)

Quantitative Microscopic Fecal Fat Score 517 (Normal Range <300 units)

Fecal anti-casein (cow's milk) IgA antibody 127 (Normal Range <10 units)

HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 06xx

Serologic equivalent: HLA-DQ 1,1 (subtype 5,6)

Fecal anti-ovalbumin (chicken egg) IgA antibody 11 (Normal range <10 units)

Fecal Anti-Saccharomyces cerevisiae (dietary yeast) IgA 11 (Normal range <10 units)

Fecal Anti-Soy IgA 119 (Normal Range < 10 units)

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Walter,

I'm pretty sure I remember you saying you had Crohn's. My SIL has that too & can't tolerate seeds at all. Same thing happens.

I don't do well with gluten-free breads (kinnikinnic really did a number on me). Maybe you'll get some answers with your elimination diet (post B-day, of course - BTW, Happy B-day when it comes).

I hope you get relief from the stress soon.

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Walter, I think since you are Celiac and are still eating wheat that it is not the gluten-free items that are making you feel bad, but the overall state of your digestive system is still messed up. (I don't know anything about Crohn's but eating gluten can't be helping it.) And it won't be easy to tell what else is wrong until you cut out gluten. Then you could do an elimination diet to see what else is messing you up. Eating just plain food for a few weeks would help - plain chicken and beef, veggies, rice, sweet potatoes. Then see if there is something in the gluten-free replacements that is messing you up- like soy, tapioca, corn, potato, dairy.

This is copied from Collen's (Cruelshoes) post on another thread. I thought I'd post it directly here.

I think it's really easy for us all to tell you not to cheat. That isn't really the issue. The important thing is to figure out why you feel/felt compelled to eat foods that are not safe for you. Once we know that, we can help you over come it. What is the main issue for you?

- Can't eat family favorites? Post some recipes and we'll help you convert them.

- gluten-free is not as convenient? We can give you ideas for grab-and-go foods.

- gluten-free food too expensive? We can give you ideas on how to get the costs down.

- Don't know how to cook tasty gluten-free foods? We can help you find easy, delicious recipes.

- It's hard to eat out? Tell us what you like to eat and we can help you get a safe meal at a safe restaurant.

- Don't know what to eat? We can help you learn to read labels.

- Don't know how seriously sick you can get from eating gluten? Let some of us that nearly died before diagnosis tell you how serious it can get.

- Don't have the will power? We can help you with that too.

I'm sure there are other things that can make someone want to cheat. Once you get to the bottom of why you do it, you can figure out how to keep from doing it. End of Colleen's post.

I hope you feel better Walter and keep strong! You can do this.

~Laura


Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

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Hey, Walter, glad to see you back!

Other possible medical issues aside, I think you are doing 2 disservices to your tummy:

1) Occasionally eating gluten, which does not allow said tummy to heal. There are no ifs, ands, or buts about this--eating gluten is simply not an option, period. There are studies which confirm that damage is done by occasional CRUMBS of gluten!

2)Eating gluten-free bread products BEFORE the tummy has healed (which hasn't yet happened because you are occasionally eating gluten!). Those gluten-free bread products hit the tummy like a large, heavy brick if your gut has not healed. Most of us had the same experience, which is why you see many of us repeating over and over, "Start the gluten-free diet by eating naturally gluten-free foods--meat, chicken, fish, fresh vegies, fresh fruits, rice, and potatoes"

If you must have a snack (and boy, I sure felt like I HAD to snack!), try Fritos plain corn chips and Guittard semi-sweet chocolate chips. If you don't have a problem with nuts, eat nuts. BUt for heaven's sake, don't eat the gluten-free bread substitutes until your poor tummy has had a few months to heal, otherwise you are just damaging the damage!

Laura and COlleen are absolutely right--tell us what you want to eat (besides bread), and we'll tell you how to make it or where to buy it! Or if you have trouble planning ahead, we can post a sample menu and a shopping list!

IT REALLY DOES GET BETTER. Trust us--we've been there.

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thank you to all who have posted responses so far! I appreciate all of the input. I guess in some way I am in some denial about how much I need to do/change in my diet and lifestyle. The gluten free products do seem to send my stomach into an absolute mess. I had some gluten free bread with dinner and I am alreday paying for it terribly! So I am going to try what many have mentioned and go to an all natural (no processed gluten free diet) and let things heal up more. I am not sure how to plan a menu with no processed gluten free stuff because I am a picky eater to begin with so if there is any advice on that I would be glad to hear it. (thanks in advavce!) Also. it could be the Crohn's that is acting up but it seemed to have gone into a remission period (which can happen but I and the doctors cannot predict when that starts and stops) so perhaps I am having a flare up. Nut allergies? maybe. That is one I did not consider as I just assumed it was not applicable to me, but with the intense stomach pain and upset that the sesame seeds cause dI suppose it is more than a possibility. So I need to change more drastically, call the doctor, and try to come up with a way to eat all natural non processed gluten free until I figure out what's going on with my stomach or until I feel better and heal. I am disappointed with myself and honestly fed up with all of the things I need to do but that is my own fault. I need just deal with what I need to and get on with things. As for what may stop me from eating gluten free at all times, I will refer to the post with possible reason and I will list reasons for my mistakes below and if anyone has suggestions please feel free to post. It am ready to do whatever I need to do...

- gluten-free is not as convenient?

- gluten-free food too expensive?

- Don't know how to cook tasty gluten-freee foods?

- Don't know what to eat? (sometimes I do and sometimes I am not sure)

- Don't know how seriously sick you can get from eating gluten?

- Don't have the will power?

Thanks again to everyone fo rhte insight and suggestions. I was doing much better for a while some time ago. Then when depression and anxiety hit me very hard I slipped up badly and didn't follow the diet as closely and ate gluten at times and now of course my stomach is a mess again. It is also very unpredictable.

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Walter when I went gluten-free I ate a lot of fruit lol, tinned as well as fesh it had been years since I had eaten much and I always keep it on hand for the times I have the "nibblies"

Another easy thing for me is gluten-free pasta and sauce, although you might be wanting to avoid the pasta if you don't want anything processed at the moment

How about planning your meals ahead if you want to stick to fresh while your body heals? Use the specials for that week and work it out accordingly I am in Australia so not sure what is handy for you. I have 3 supermarkets in my town as well as 1 butcher and 1 fruit and veg

The fruit and veg shop I particularly like as they try to buy local and fresh and keep the prices down, the owner says he sees the "spies" from Coles come in (Coles is right across the road) and write down his prices

I am on a pension so am limited as well. A good tip here is to shop around the outside of the supermarket, ie fresh fruit/veg/meat / dairy and only go into the aisles for basics ( that's coffee for me lol) ie dishwashing liquid/ garbage bags etc and not the processed stuff

Hope this helps!


Diagnosed Eczema 1964 aged 16 but with what I know now from research am sure it was Dermatitis Herpetiformis

Diagnosed Irritable Bowel Syndrome 1969 at age 21 but had it from age of 12 many painful episodes over the years( was probably Coeliac all along)

Diagnosed Hashimoto's Disease/Hypothyroid November 1994

Low B12 November 2006

Low B12 (still!) July 2007 Docs are happy with results just above low end of normal..*sigh*....still need to resolve it

Gluten free since October 2006 after failing gluten challenge

Diagnosed Hiatus Hernia and Los Angeles Grade A reflux via endoscopy October 2007

Diagnosed with Coeliac Disease via same endoscopy / biopsy October 2007 (took them long enough!) despite being gluten-free damage still evident although had been taking iron tablets for iron deficiency without realizing they contained gluten. Subsequent blood tests show :Positive Anti-Gliadin IgA EIA antibodies, Positive Endomysial antibodies ,Positive tTG IgA antibodies of 300 ("normal" range 0-15)

Auto-immune disease goes back at least 5 generations in my family (and counting) Mainly Type 1 diabetes and rheumatoid arthritis.

Number 1 Son has Type 1 diabetes ..diagnosed March 2007 at age 31, number 2 son aged 24 is A/I disease free so far ,daughter has lichen planus ( similar to psoriasis) diagnosed 2003 at age 17 am now wondering if it is DH but with flippancy of the young she won't get any testing done

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Hi. I was having all sorts of problems after a year and a half gluten free. I was having D, which I never had (always on the C side of things), and just not right in a myriad of ways. I finally got the stomach flu or something; spent a night throwing up, which I do not do with very much grace.

Needless to say, I changed after that. I was already being pretty meticulous with gluten, but I decided to go even further. Not that I would expect you to, but in my getting rid of all sugar and the like, I realized how "easy" it is to be gluten free. It takes an effort to eat gluten, really.

YES:

Vegetables - all of them. Cooked, raw, etc. Make sure to wash.

Fruits - all of them. Cooked, raw, etc. Make sure to wash, and peel if inorganic.

Eggs: high allergen food, but if you aren't allergic, perfectly good source of protein

Meats - I usually stick with fish/chicken, but also buffalo, steak, etc. Any meat stuff.

Nuts/Seeds - if your system can handle them. Soak overnight first, then let dry. This kills enzyme inhibitors.

Apple Cider Vinegar

Fermented sauerkraut (RAW) whenever I eat meat

Coconut Oil for cooking, olive/flax/hemp oils for eating raw

NO:

Grains. Quinoa is safe, as is millet and a couple others - I just don't digest them well and avoid them entirely.

Beans. Again, gluten free, but I don't do well with them so avoid them entirely.

Dairy. If I were to do dairy, I would only do raw dairy; but I'm intolerant, so I avoid it entirely.

Gluten Free Replacement Foods (cookies, cereals, bread mixes, etc.) (THESE ARE EXPENSIVE.)

Prepackaged Foods (see above, add soups, chilis, etc.) (THESE ARE EXPENSIVE.)

Any processed sugar or highly sugary fruits (the no sugary fruits is only temporary to kill bacteria/yeast)

Cooking with oils other than coconut

After two weeks like this, I finally started feeling better. The weird taste in my mouth went away, I started to digest my food again (though i did start taking enzymes and Betaine HCI, as well as acidophilous), and I stopped fearing the bathroom so much. At first it feels like there isn't anything in your stomach to "soak up" your dinner. I think we're all used to that feeling. But once you get used to it, it feels great - like you're satisfied after eating, withouth feeling "full". I've even started eating about 60% of my food raw.

I know it's hard when you're used to grabbing food that is edible out of the package, or that doesn't need recipes and the like, but it's so worth it if you can manage it.

This is just one way. It would not work for everyone. Just thought I'd put it out there. Good luck.

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Here is a suggested day of easy, convenient, meals for you:

Breakfast: Eggs--scrambled, hard-boiled, fried, however you like them--juice, and coffee or tea if you are a caffeine addict. If you are not a caffeine addict, try herbal tea--some of them are lovely! I would suggest that if you are used to cooking eggs with butter, that you continue to do so keeping in mind that you might have to cut out the butter, too, if you react to it--but don't fret: many of us were able to add dairy back into our diets after our guts healed, and, while I eliminated most dairy at the beginning of going gluten-free, I was able to tolerate butter just fine--hope it's the same for you!

If you are a total-egg-hater, then have sausage, just make sure you read the label!

Wait til you see how energetic you stay all morning with no heavy bread products to weigh you down! You'll never want another bagel!

Lunch: salad! You can pack this yourself.

In one tupperware container, put washed and dried salad greens (I like red romaine best).

In another, put chopped vegies: red onions or green onions, cherry tomatoes (don't need to be chopped), shredded carrots (can buy pre-shredded, very convenient), diced sweet red pepper, chopped celery, etc.

In a zip-loc plastic bag, place some deli lunch meat (ask to see the label at the deli counter to make sure there is no gluten, wheat starch, soy sauce, etc. in the ingredients) that you have sliced.

In the last, smallest container, put some of your favorite salad dressing (again, check labels!) or even better, some slices of lime (this tastes really, really good squeezed on salad, especially if you add some chopped parsley or cilantro).

At lunch time, dump your dressing or squeeze you lime on the greens, top with vegies and lunch meat, and enjoy!

There are also many soups that are gluten-free. Trader Joe's sells several. Stay away from most Campbell's, though some of their "select" soups are fine.

For dessert, you can get some of those individual bowls (they come 6 to a package, I think) of fruit or applesauce, or you can wash the bug spray off some grapes and pack those.

For snack--Fritos!!

For Dinner: grill some meat, chicken or fish, or if that is too much work, have some sliced roast beef from the deli counter. Add rice (minute rice is just fine!), and some steamed green beans or broccoli.

For dessert, how about fresh strawberries, or apples dipped in honey, or even canned peaches or pears sprinkled with cinnamon sugar?

And there's always my favorite: dark chocolate. Or a spoonful of Nutella--yum!

Go for it! And report back to us and tell us of all your wonderful, delicious, healthy meals!

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Hi Walter,

Good to hear from you. Everyone's given you great advice already, so I'll just add a $.02 worth. I'm one of those people that needs to be entertained by my food and can go through various "diets" while being gluten- and allergy-free at the same time. One year, I ate foods from a different region of the world for a week. Sometimes it would be one country or area of the U.S., sometimes two. Another year, I highlighted the various gadgets and appliances in my kitchen for a week or so, although a week's worth with the Fry-Baby is probably not the greatest of ideas! My current thing, which should probably be maintained for a lot longer than a year, is eating the rainbow of produce. The red, the yellow/orange, white, green and blue/purple. Some cookbook authors and nutritionists break it down more than that. Oh, and I've never quite gotten over the Japanese tradition of cooking with the seasons and making the food look like art. Hope that helps, even if just a little bit.

Margaret

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