My Diet Sucks - Major Vent

[julandjo]

So I've been gluten free for 13 months now. I've reacted to more and more foods as I go along, and at this point I'm back down to 7 foods plus a few spices. I was up to 9 foods, but the 2 I gained (rice and strawberries) proved to be failures after all. I'M GOING CRAZY on this diet. I've been at or near this level of restriction for almost 6 months now. When does this get any better??

In January I went to see a new doctor who specializes in Celiac and she could not help me, so she sent me to a dietician. The dietician had me start glutamine supplements - my reaction to that nearly landed me in the hospital (turns out anyone with a sensitivity to MSG should avoid glutamine - nothing like finding out by dumping 2000mg into your body!). She was also completely baffled by my situation, and when I expressed my growing hopelessness she joked that maybe I'm "one of the lucky few people who go their whole lives like this"! Was that supposed to be funny?! So now I'm being referred to a nationally-renowned (or so they say) Intestinal Rehab Program. When I spoke w/the nurse coordinator today it sounds like they plan to run a few days' worth of tests (all of which I've had done in the past year already), and then have me meet with a team including a GI specialist, dietician, therapist, etc. I'm seriously questioning whether this is worth my time and money. What on earth can they do for me?

I sat down with my food & symptom journal a few weeks ago and just read through the past year. Even though it's hard to see in my day-to-day struggles, I rejoiced to see that I've come a LONG way. Things that used to be part of my daily life - high blood pressure, joint pain, left-sided chest pain, lethargy, neuropathy - are just GONE. My vitamin/mineral levels have drastically improved, as has my cholesterol. For the first time in my life I feel my age (31), instead of someone much much older. I enjoy my life and my kids much more now and feel truly blessed to have made such a physical recovery. But this level of restriction is extremely difficult. There is zero leeway; the consequences last for days and make me miserable to be around which is unfair to my family.

Ughhh... sorry for the sobfest. It's just a rough week.

Julie

[Katie B]

Hi Julie,

I can definitely relate. What is the Intestinal Rehab Program that you mention?

Have you heard of the low FODMAP diet? I'm not sure if it is of any interest to you but I've tried it with much success (tried the SCDiet previously and it didn't work this time around). I use this diet + gluten-free + low-carb and it seems to be working well. You can get the low FODMAP diet booklet from Monash Unviersity (there is a lot of conflicting info. on the web) and Sue Shepherd (Shepherd Works) and Jaci Barrett (Diet Solutions) are the main dieticians working on the project.

Hope this helps!

Katie

[julandjo]

Hi Julie,

I can definitely relate. What is the Intestinal Rehab Program that you mention?

Have you heard of the low FODMAP diet? I'm not sure if it is of any interest to you but I've tried it with much success (tried the SCDiet previously and it didn't work this time around). I use this diet + gluten-free + low-carb and it seems to be working well. You can get the low FODMAP diet booklet from Monash Unviersity (there is a lot of conflicting info. on the web) and Sue Shepherd (Shepherd Works) and Jaci Barrett (Diet Solutions) are the main dieticians working on the project.

Hope this helps!

Katie

I really don't understand what the program entails, just that I'll be working with a whole team of specialists to try to get answers, versus the one-doctor route I've been going so far. This program specializes in people who have a whole variety of intestinal disorders or injuries/transplants. I have to assume that these people, if anyone, will know what to make of my predicament.

As far as FODMAP or any other specialized diet, there's nothing I can do. I'm only eating 7 foods (chicken, beef, turkey, carrots, sweet potatoes, apples and blueberries. Oh and olive oil.) and have not successfully added anything. As long as I stick to those foods I feel great; any deviation and I'm in physical hell. My diet IS an eating disorder.

[cahill]

I'm only eating 7 foods (chicken, beef, turkey, carrots, sweet potatoes, apples and blueberries. Oh and olive oil.) and have not successfully added anything. As long as I stick to those foods I feel great; any deviation and I'm in physical hell. My diet IS an eating disorder.

I can eat a couple more foods than you do, sweet potatoes,lamb,turkey,pork,beef ,carrots,peas,broccoli,olive oil,peaches and blueberries .. I have been eating rice and NOW I am starting to wonder about it,

May I just say THIS SUCKS!I have reacted to almost everything I have tried to add back ((since starting my elimination diet in Jan.))

I try to stay positive, really I do ,, But I am tried of fighting and I am tired of feeling like crap.

Sorry , some days, like today, it just gets to me ,, just want to say,I do understand (( HUGS))

[gary'sgirl]

I had a very similar situation happen once I went gluten free. I was down to no meats only a few veggies and blueberries and raspberries - I couldn't eat apples - I think there was something else, but I'm drawing a blank right now. Anyway, the same thing was happening - one by one I had to keep taking more and more out of my diet until it seemed i couldn't eat anything.

I still wasn't feeling well, though and in desperation I was looking around at all the different diets and things that others had tried to heal their gut.

I stumbled across the Specific Carbohydrate Diet and ordered the book so I could get more detailed info as to why it was supposed to help and it really made sense to me. I started it and within a couple of weeks I could eat a little meat and have been able to gradually add more and more into my diet as the months have gone by (I started the diet the end of September 2010). I am not completely better yet, but am noticing little by little improvements in how I feel - not to mention it's great to have more in my diet. I had been gluten free for one year when I started the diet.

I just thought I would suggest looking into it, because you are already almost on the diet with what you are eating. The only thing you eat that you wouldn't be able to eat while on the diet is the sweet potatoes. I thought it might be worth looking into, anyway.

I hope the best for you - that you will be led to do what will help you to heal. This can be such a discouraging journey! Please post if you find something that you think will help - whether or not it ends up being that program you mentioned.

[gary'sgirl]

Oh, I also wanted to mention that some people use the Gaps diet, which is very similar to the SCD, but with the same idea in mind.

[Katie B]

Thanks Julie - where is the program? What is it called?

[julandjo]

Thanks Julie - where is the program? What is it called?

It's called the Intestinal Rehab Program. It's at a transplant center in Nebraska.

[cassP]

I really don't understand what the program entails, just that I'll be working with a whole team of specialists to try to get answers, versus the one-doctor route I've been going so far. This program specializes in people who have a whole variety of intestinal disorders or injuries/transplants. I have to assume that these people, if anyone, will know what to make of my predicament.

As far as FODMAP or any other specialized diet, there's nothing I can do. I'm only eating 7 foods (chicken, beef, turkey, carrots, sweet potatoes, apples and blueberries. Oh and olive oil.) and have not successfully added anything. As long as I stick to those foods I feel great; any deviation and I'm in physical hell. My diet IS an eating disorder.

if you can eat apples and feel fine, you probably dont have an issue with fructose (part of the FODmap diet)- BUT i honestly have to say- that in the past i could SOMETIMES get away with an apple- but a pear would give me so much pain, i would wish i could have an epidural.

im sorry you're having to stick to so few foods... im wondering IF part of the problem is that you're not getting enough fruits & veggies that have natural digestive enzymes in them to help you digest?? idk...

have you considered JUICING?? for some people- the actual pulverization of the different fruits & veggies make them easier for a compromised body to digest... i however with my fructose problem cant do some of the juices... but the ones i can really help me feel better (i can do spinach/pineapple/beet)-> actually a beet and pineapple before a meal could help u maybe ****Just dont ever drink beet on it's own.. because beet juice is very comparable to actual stomach acid- if you dont mix it with something- it will burn your esophagus. i learned this the hard way.

also- black cherry juice can help with digestion.. drinkin a little before a meal.. or even marinating a steak or lamb in it over night can make it easier to digest.

ok, i'll shut up now. hope you can add more foods soon

[GFinDC]

Have you tried not eating the carrots? Carrots are no friend of mine. Just a thot.

[cassP]

Have you tried not eating the carrots? Carrots are no friend of mine. Just a thot.

SO interesting... i never had a prob with carrots EVER... and now, since going gluten free, i have developed an allergy to raw carrots!!! what the h is up with that??? so weird

[julandjo]

Have you tried not eating the carrots? Carrots are no friend of mine. Just a thot.

I have gone a few days without carrots, and it hasn't made any difference it seems. And if I stay on just those foods I feel pretty awesome.

I wanted to tell you too - you were who suggested I give up the white potatoes I was clinging so hard to a few months back. Well I gave those up, as well as peas. And guess what? Within a few weeks, the chest pain that had been CONSTANT over the past few years disappeared. Completely. Talk about life-changing!

[julandjo]

if you can eat apples and feel fine, you probably dont have an issue with fructose (part of the FODmap diet)- BUT i honestly have to say- that in the past i could SOMETIMES get away with an apple- but a pear would give me so much pain, i would wish i could have an epidural.

im sorry you're having to stick to so few foods... im wondering IF part of the problem is that you're not getting enough fruits & veggies that have natural digestive enzymes in them to help you digest?? idk...

have you considered JUICING?? for some people- the actual pulverization of the different fruits & veggies make them easier for a compromised body to digest... i however with my fructose problem cant do some of the juices... but the ones i can really help me feel better (i can do spinach/pineapple/beet)-> actually a beet and pineapple before a meal could help u maybe ****Just dont ever drink beet on it's own.. because beet juice is very comparable to actual stomach acid- if you dont mix it with something- it will burn your esophagus. i learned this the hard way.

also- black cherry juice can help with digestion.. drinkin a little before a meal.. or even marinating a steak or lamb in it over night can make it easier to digest.

ok, i'll shut up now. hope you can add more foods soon

Yeah see I agree - I don't think I have an issue with fructose. Most days I eat 2-3 apples, plus 8-12 ounces of unfiltered apple juice, without issue. Apple has been my main source of carbs. I've never tried juicing, that might be something to look into. Due to a latex allergy I have to avoid all tropical fruits, so that might be difficult. And I'm interested in cherries and cherry juice. I think that will be my next food trial!

Thank you everyone so much for your input and support! I love this board and this group of helpful folks!

Julie

[Looking for answers]

Have you been tested for SIBO, or small intenstinal bacteria overgrowth? My GI mentioned it to me lately and said when people seem to be intolerant to nearly everything, this is usually what they have...just a thought.

[julandjo]

Have you been tested for SIBO, or small intenstinal bacteria overgrowth? My GI mentioned it to me lately and said when people seem to be intolerant to nearly everything, this is usually what they have...just a thought.

I haven't been tested for this. Interesting... how does one get tested?

[gary'sgirl]

Have you been tested for SIBO, or small intenstinal bacteria overgrowth? My GI mentioned it to me lately and said when people seem to be intolerant to nearly everything, this is usually what they have...just a thought.

SIBO is basically what the SCD and GAPS diets address, because to some degree all people with intestinal problems also have a bacterial imbalance (at least that's what I understand from all my research and reading).

[GFinDC]

SO interesting... i never had a prob with carrots EVER... and now, since going gluten free, i have developed an allergy to raw carrots!!! what the h is up with that??? so weird

I used to eat lots of carrots. But on one of my elimination diet rounds I found they were a problem. Bummer, they are fun to eat with all that crunchiness.

Open Original Shared Link

If you are allergic to Birch pollen Ragweed pollen Grasses Mugwort pollen

You may also have a reaction to: Apples

Carrots

Celery

Hazelnuts

Peaches

Pears

Raw potatoes Bananas

Melons

(cantaloupe, honeydew and watermelon) Tomatoes

Tomatoes Apples

Carrots

Celery

Kiwi fruit

Peanuts

Some spices (caraway seeds, parsley, coriander, anise seeds, fennel seeds)

This is from a table on Mayo Clinic's site.

I have gone a few days without carrots, and it hasn't made any difference it seems. And if I stay on just those foods I feel pretty awesome.

I wanted to tell you too - you were who suggested I give up the white potatoes I was clinging so hard to a few months back. Well I gave those up, as well as peas. And guess what? Within a few weeks, the chest pain that had been CONSTANT over the past few years disappeared. Completely. Talk about life-changing!

Hey, that's great! Less pain is a good thing. I am glad it helped!

[cahill]

I haven't been tested for this. Interesting... how does one get tested?

I second that question,, How is someone tested for SIBO and what would be the recommended course of treatment ?

[jenngolightly]

I was also very sick last year and couldn't eat many foods. I took on the specific carb diet and have been on it for 11 months. It's done wonders for me. I'm still very restricted on my diet, but I can eat about 50-60 foods/spices/oils/etc now.

One of the things it suggests is to cook all fruits and veggies (and to peel the fruits and veggies before eating). This helps with digesting them. So even if you don't want to do the diet, you might try that option.

[irisheyes13]

Julie,

I'm new around these parts and other than this thread, I'm not familiar with what you have gone through but it sounds like a tough road. Have you ever had a colonscopy to check for microscopic colitis? I have MC and it goes hand in hand with multiple food intolerances. I'm not suggesting that you do have it but often times people with celiac disease who are gluten-free and still have problems can have MC.

There is a test called MRT which tests for food intolerances that seems to be helpful for people with multiple sensitivities and are having problems with introducing new foods. After having the blood test you work with a dietitian in your area who helps with introducing foods (LEAP diet) which you test safe for and slowly you introduce new foods. The test checks for about 150 foods/seasonings and the results are then correlated with what you already know you can have/not have. I have not had the testing done yet but plan to do it soon.

Here is a excerpt to an article by Scot Lewey giving a brief explanation as well as a link to the MRT site:

Food intolerance and sensitivity reactions that are not due to an allergy:

Certain foods, additives and chemicals are capable of triggering immune reactions that are not due to allergies. Chemicals mediators released by the immune system are capable of producing a variety of body reactions and symptoms. Avoiding foods that produce such reactions is suppose to resolve or at least significantly improve symptoms resulting from eating those foods. Mediator release (MRT) testing measures the release of chemical mediators from white blood cells and platelets in response to specific foods, additives or chemicals. Such chemical reactions presumably indicate sensitivity to these foods or additives.

Principles of commercially available mediator release testing (MRT):

Commercially available mediator release testing (MRT, Signet Diagnostic Corporation, Open Original Shared Link) is based on measuring in the blood the reaction of various immune mediator chemicals released into in response to a food or chemical to which you have become sensitive or intolerant. The result is that when exposed to such foods or chemicals your blood cells release various chemicals that cause an alteration of the ratio of solids (cells) to liquid (serum) in your blood that can be measured. The white blood cells and platelets shrink and the volume of the liquid increases. The degree of change can be measured and reported as mild or moderate to severe corresponding with the degree of sensitivity to that particular food, additive or chemical.

Test results of 150 foods and chemicals combined with elimination diet and counseling:

A panel of 150 food and chemicals (123 foods and 27 chemicals) is available. The foods or chemicals producing abnormal reactions are summarized in color tables provided along with a comprehensive report containing a result's based specific elimination diet plan supplemented with several hours of personalized counseling from a dietician.

Insurance coverage for MRT food sensitivity and intolerance testing:

Several insurance carriers pay for at least a portion of the cost of this testing however because it is considered "out of network" for most plans patients are usually responsible for payment of the service. Some carriers consider the testing "experimental" or not validated and therefore do not cover the testing.

Conditions benefited by MRT testing include migraines, IBS, fatigue and fibromyalgia:

Signet markets the testing for several conditions based on limited published research combined with their extensive clinical experience and patient testimonials. They claim success with reducing or eliminating a myriad of symptoms or conditions. These include migraines, headaches, autistic behavior, anxiety, depression, ADD, sinus and ear, nose and throat problems, irritable bowel syndrome, vomiting syndromes, Celiac, chronic stomachaches, bladder problems, fibromyalgia, arthritis, eczema, hives, and chronic fatigue syndrome.

Skeptical doctor and frustrated patients look for answers:

Initially, I was skeptical about MRT. However, I began advocating it several months ago because many of my patients had ongoing symptoms or findings that suggested an ongoing food intolerance or sensitivity but the testing available to us could not tell us what food or foods may be a problem. After reviewing the available research data I concluded MRT testing had adequate scientific basis to recommend it as an option to those who were interested and would consider making dietary changes based on the results.

Expert food allergy doctor and patients find MRT testing helpful and worthwhile:

So far, my experience is that most of those who have undergone the testing and implemented dietary changes as a result have noted significant improvement in a variety of digestive and non-digestive symptoms. I have also noted some very interesting patterns in people with other allergies. There appears to be a strong correlation with food-pollen cross reactions, more commonly known as the oral allergy syndrome (OAS). I am following this systematically and hope to report my observations formally in the future.

Previously available testing and diet interventions fail to provide relief in some patients:

All of my patients who have decided to undergo MRT testing have already been tested for Celiac disease and most have had food allergy testing as well as both upper and lower endoscopy exams with biopsies. All also had already tried dietary interventions. Some have had tests that confirmed one or more food allergies, Celiac disease or gluten sensitivity or have presence of mast cell enterocolitis; eosinophilic esophagitis, gastroenteritis or colitis; or lymphocytic enteritis. Though most had some improvement with dietary interventions based on their previous tests, many had ongoing symptoms with or without inconclusive or negative food allergy testing.

Get MRT testing and try an elimination diet:

I believe MRT testing is a helpful addition to the evaluation and treatment of food intolerance. The testing does require a doctor's order. If your doctor is not familiar with the testing they can learn more at Open Original Shared Link. If your doctor will not order the testing Signet can help you locate a doctor in your area or you can obtain the testing as part of an on-line consultation. An elimination diet based on specific foods to which you are intolerant but not necessarily allergic to may be the key to relief from a variety of symptoms and conditions. If you are suspecting a food intolerance, get tested today.

The Food Doc, Dr. Scot Lewey, is an expert medical doctor specializing in digestive diseases and food related illness, especially food allergies, celiac disease and colitis. Dr. Lewey's expert reputation as the Food Doc is established by a foundation of formal training in internal medicine, pediatrics, and gastroenterology (diseases of the digestive tract), his personal and family experience with gluten and milk sensitivity, and over two decades as a practicing physician, clinical researcher, author and speaker. Access this expert knowledge online today at www.thefooddoc.com

FWIW, I would have to agree that you may have better luck with vegetables and fruits if you peel and cook them. Good luck to you and I hope you are able to add some new foods soon!