Need Some Help!

[steve e]

This is my first post. i really need some advice from people who are expierencing the same thing as me. I went to the doctors the other day and they scheduled me for a endoscopy and colonoscopy to check out my digestive system, they seem to think I have Celiac but want to check for other things as well since I've been gluten free for going on 5 months and I'm still having issues. the doctor said that they still want to do the biopsy even though I havent been consuming gluten, because its possible that it will still show, and it is highly possibly that I'm being cross contaminated at my job where I'm around pastries all day. The cross contamination would explain some of my symptoms, and I feel awful after my job, my joints ache and I feel completely drained even after 2 hour there. any way the doctor seemed sceptical of my other complaints and other food reactions.

Growing up I always had digestive issues and was constantly sick, in fact I was always at the doctor or in a cast for a broken bone and I was hospitalized around once a year. I had many allergies growing up mainly to soy,milk, and eggs. but my problems realy started about 3 years ago after a heavy dose of intervenous antibotics due to lyme spirocetes found in my central nevous system that left me paralyzed for three months. after the drugs and recovery from the paralyzayion they put me on a diet to recover from the muscle atrophy I had experienced. this diet was heavily grain based and after a month on it I hadn't had a solid stool and my stomach hurt intensely, they told me to have yogurt despite my dairy allergy. I stuck to that diet of whole wheat and pasta for two years, never having a solid stool,becoming a vegan because i thought it was the meat, until feburary of this year when I couldn't take it anymore the pain was so bad I felt like i was going to faint every time i went to the bathroom, I was having spasms on my left side and I would have uncontrolable bowel movements and sit on the toilet sometimes up to 5 hours. my weight had went from 147 pounds to 112 pounds in that two year span, my dad thought i was doing drugs, my eyes were always glazed, my school performance was dismal, and other relatives thought i was anorexic and would push food on me.

I noticed felt the worse after bread, pasta, and cereal. I stopped eating these and after a week I had a solid stool. I started replacing the wheat and other gluten grains, based on the research this discovery prompted, with millet, rice, quinoa, and other grains and my diet was still grain heavy. the symptoms returned although the spasms stopped and the pain wasn't nearly as bad, but the uncontrollable diahrrea was back and my eyes were still glassed. my mom convinced me to try a raw diet that excluded all grains, the stomache pain persisted, my stools were looser than ever, and i felt tired all the time and my weight continue to drop, the glassiness in my eyes was apparent and my dad was pushing for me to be drug tested. I also tried bread once during this period to see if that was realy a cause since i still was having problems, after that one slice i felt like i was paralyzed again and laid in bed for a couple of days. by May of this year I was at the end of my rope and decided to try something that hadn't crossed my mind, eating meat. i thought it was unhealthy but clearly what i was doing wasn't working so i ate some beef. I tolerated it well no problems, I was surprised to say the least. all of May was spent trying to see what foods I reacted to and it seemed like everything. here's what certain foods do to me

FRUITS: all fruits give me stomache pain except for small amounts of raspberries, blackberries, and blueberries. Tropical fruits are the worse and i break out and get mouth sores with them

VEGTABLES:sweet potatoes kill my stomache and make my joints that were paralyzed hurt, tomatoes, potatoes and peppers rack my joints and cause discomfort, squash make my stomache ache and spasm. all others are tolerated quite well the best being well cooked carrots and celeriac

GRAINS: all leave me with diahrrea joint pain and fatigue. was told in late may that I should try rice again, left me on the toilet for an hour and with joint pain.

BEANS: pretty much the same as grains

MEAT: all meat is tolerated except I seem to get diahrrea with chicken. fish is fine, but I swell with shellfish.

NUTS: stomach ache, headache, overwhelming desire to sleep, very glassy eyes, and bags under my eyes

After I decided to take a week off of work, eat only meat and the tolerated vegatables for a week, my bowels were solid, my energy was up, I was taking walks outside my mood was up. my dad looked at me and said "your eyes look normal" the eye thing is compeling because anytime I eat one of those foods I cant tolerate my eyes glass over and i feel drugged. i seem to be hypersensitive i eat one of those foods and it just saps me, i crawl into bed and sleep, i ate some nuts today and had to take a three hour nap and still feel tired as i write this. the only food that feels like it gives me strength and energy is bone marrow, which i tried to get variety in my meals and fell in love with it. My parents think I'm crazy, even after seeing the results of the week of eating only what I tolerate. and the doctor seemed to think so to. and he freaked when i told him what i ate during that week mostly organs, meat, fat, and a few servings of veggies and berries. I'm not sure they believe me. but i think i done trying foods to prove it.

sorry for the long post. any idea what could cause all those intolerances. I'm fine with the diet I discovered and can live with it happily based on the results, but knowing the cause would be comforting. I'm almost 20 and have never realy known what it is like to be healthy, although I feel like I'm getting closer. any help is appreciated thanks.

[Nancym]

Maybe you have a fructose intolerance.

Meat is good stuff. It just isn't very fashionable right now.

[AliB]

Hi Steve. Welcome to the forum.

Many who are gluten intolerant find that they are also intolerant of other foods. Many of them can be other carbohydrates. You do seem to also have reactions to foods of the nightshade family - potatoes, tomatoes and peppers too.

Whilst a lot of these intolerances can be down to, and the cause of gut damage, I am sure that it can also be due to our livers not being able to process the foods properly due to toxin overload.

As you have found that certain foods are tolerable, you are probably better off sticking with those foods for a while to give your gut a chance to settle. Interestingly, most of the foods you are coping with are a selection of those that are included in the Specific Carbohydrate Diet (SCD) which is designed to help to heal the gut, and the body, in those with intolerances. Damaged guts very often don't seem to be able to cope with starchy carbs.

I found that my diet was restricted very similarly to yours. Gradually after starting the diet I was able to reintroduce more foods. I started very basically with turkey and carrots and a few other veg - eggs came in a few weeks later, gradually a few more fruits, like grapes. Although they are SCD 'legal' it took about 8 or 9 months before I could tolerate nuts, but I was just glad to be able to eat what I could and had much more choice than 9 months earlier when everything was causing me intense pain and was just running straight through me.

Now, 15 months later I am still on the diet and can eat anything 'legal' that I want. I have chosen not to go back to 'normal' eating because I have realised what damage it did to me. I now stick mostly to nutrient-rich good wholesome natural foods.

The diet starts with gentle foods liked cooked carrots and chicken or turkey and slowly introduces other foods - all natural - none processed, or 'mucked about with'. It does mean more preparation and home-made, but hopefully you can get your Mum on board to help you with that.

Farmed organic is better than 'plastic' and home-grown on nutrient-rich soil and no chemicals even better. Unadulterated organically-reared sources of meat and poultry and wild fish to reduce your chemical exposure and give your liver a chance to detox is better too. Can be more expensive, but you probably don't need quite so much to get more benefit!

The SCD is becoming so popular now that there are loads of sites and blogs, and there is an ongoing thread in this section that you are welcome to jump in to on the last page (unless you feel like reading all 140-odd pages!) where we all give each other mutual support on the diet. The main website for the diet is 'breaking the vicious cycle'. 'Pecanbread' is another useful site.

If you choose to get tested for Celiac Disease it might be as well to do it now whilst you are still exposed to some gluten and hopefully still carry some antibodies. If you are in the UK you may be able to get foods on prescription if your diagnosis is positive but they are usually processed carb-based things which you may not be able to tolerate anyway. The testing can be pretty brutal as it usually involves a biopsy and may or may not be conclusive.

[chatycady]

Excellent advice! I too had similar problems. No grains, no sugar, no potato's, yams, rice, no citrus fruit, no nuts, no diary, no soy, etc. etc. etc.... I too follow the SCDiet and feel it saved my sanity and probably my life!

CHeck it out and don't be discouraged. If you get rid of the foods that cause trouble, your stomach will finally heal. It may take a couple of years, but you will feel so much better. I will never go back to eating like I used to. I like this diet and it's very very healthy.

P. S. 50% of my diet is meat/protein. But it's GOOD protein and my body hasn't looked this good since I was 20! I'm 53 with muscles!

Take care.

Chaty

They used to tell me my eyes were "funny" and they could tell when I was feeling poorly. They recently told me my eyes were bright and sparkled! (They - my church friends)

[steve e]

thanks everyone

I'm definately going to look at the specific carbohydrate diet. It would be great to have nuts and some fruit back eventually. i miss those a little. I dont think I'll ever go back to eating all the starchy stuff like I used to, it caused so many problems.

Farmed organic is better than 'plastic' and home-grown on nutrient-rich soil and no chemicals even better. Unadulterated organically-reared sources of meat and poultry and wild fish to reduce your chemical exposure and give your liver a chance to detox is better too. Can be more expensive, but you probably don't need quite so much to get more benefit!

All my meat comes from the 100% percent grassfed farm down the road and my mom only buys organic veggies, unless the store doesn't offer it. and your right I notice a difference with this food especially the meat. the farmers markets are starting up so there will be more organic options. we also have a garden unfortunately we mostly have tomatoes, peppers, and eggplants all stuff i cant have at this point.

It does mean more preparation and home-made, but hopefully you can get your Mum on board to help you with that.

I cook all my own meals now, and quite enjoy cooking actually, although I'm still learning. food tastes much better when you cook it yourself. My mom Isn't much help because she's vegetarian and makes faces and looks disgusted when I cook things like ox tounge or even steak. I'm afraid I'm on my own for this one.

If you choose to get tested for Celiac Disease it might be as well to do it now whilst you are still exposed to some gluten and hopefully still carry some antibodies. If you are in the UK you may be able to get foods on prescription if your diagnosis is positive but they are usually processed carb-based things which you may not be able to tolerate anyway. The testing can be pretty brutal as it usually involves a biopsy and may or may not be conclusive.

I'm actually going in for the biopsy next friday, and they also said they want to take a biopsy of my colon as well. the doctor wanted to do these tests to rule out other possible causes. i am a little nervous about the procedure.

thanks for all the help, you guys have really comforted me and great to get help from people who have gone through the same thing. i feel a little better now, and I'm definitely going to take a look at the specific carbohydrate diet.

[AliB]

Hi Steve. Well done you for doing the cooking and great that you have access to good food.

Being vegetarian is fine as long as you don't have any gut damage to prevent you absorbing enough nutrients from your food to make up the amino acids for the protein count. Some vegetarians can end up with malabsorption issues though because they base their diet on too many grain-based carbs and not enough fresh veg and fruit.

The SCD was originally set up to help Celiac Disease patients back in the 1940's for which it was relatively successful. It was then revived by Elaine Gottschall who was given it to help her little girl recover from Ulcerative Colitis. It has also been found to help the gut heal from damage in general, so many gut issues can be helped.

However, the diet has also been found to help other health issues apart from obvious gut ones. It has been successful for things like Autistic Spectrum, Schizophrenia, Bipolar, Arthritis, Skin problems, sleep problems, migraines, Chronic Fatigue, Fibromyalgia - well, you name it, there are people out there who have got better from these and other ailments when on the diet.

It takes time, but it does help many people recover their health, especially where gluten seems to be just one of many intolerances.

I hope everything goes ok with the biopsy. Have you had the blood test for Celiac?