Food Sensitivity Testing and CFS (need help!!!)

[Gingergrrl]

I met with my naturopath today and discussed many treatment options and also went over the results of my food sensitivity test (conducted by US Bio Tek Labs.) I have had nausea/digestive problems along with my CFS but usually after I eat meat or vegetables.

I was shocked by the results which showed I had sky high sensitivity to all dairy products (milk, cheese, casein, etc) as well as eggs, yeast, sugar, corn, etc. I have been on a gluten free diet for six months (I do not have Celiac but my endo said it would help my Hashimoto's Disease so I listened.)

I have never had any nausea or bad reaction to the foods that it said I was sensitive to on the test. In fact when I eat gluten free crackers (which have eggs in them) and ginger ale (which has sugar) it helps my stomach and now these foods are forbidden along with all dairy products which are the main things I eat. I have already lost a lot of weight from CFS and concerned what I will eat with the few foods that are left?

My ND said that food sensitivities are not the cause of my CFS by any means, but they are compounding the problem with inflammation. She said that anything we can eliminate to make me feel better we need to do.

These are my questions:

1) Is this test/lab accurate?

2) Why does it say I am sensitive to the foods that I thought were okay (versus the ones that make me sick)?

3) Does this mean I have "Leaky Gut?" (I have not officially taken the LG test but now my ND says this confirms it without the test.)

4) Do I need to eliminate these foods forever?

5) Have any of you guys followed these type of dietary restrictions and had your CFS symptoms improve?

I don't mean to sound like a big baby, I am just concerned what to eat and if this will be worth it!!!!

 

[Thinktank]

You better discuss your questions with your ND but here's my point of view after following so many protocols.

1. Yes, US biotek is one of the better labs that tests for food intolerance and allergy.
2. You might have pseudo-allergies to the foods that make you feel sick.
3. Yes, otherwise there would probably be no IgG reaction to the proteins. You could do some extra tests like mannitol/lactulose, soluble CD14, antibodies against LPS from certain bacteria etc. but imo the IgG test already shows you have a leaky gut. Just eliminate the foods you are intolerant to for a few months and see if you notice any improvement.
4. Usually not, you'll become less intolerant as your hyperpemeable intestinal lining improves with treatment. It is important to exclude the foods you are intolerant to for a while to give your immune system a break.
5. Yes, i've eliminated gluten, dairy, eggs and beans and it has helped with the inflammation.

Take a look at the GAPS diet, SCD diet or other diets that help heal a leaky gut. Diet and bacterial dysbiosis is not always the cause of a leaky gut but it's a good thing to start with.
I've learned that it's also important to rotate your foods because you might end up creating new intolerances if you replace one food with the other.

 

[ahmo]

GAPS, Gut and Psychology Syndrome diet has been foundational to my healing over the past 2.5 years. It removes not only gluten and dairy, but all starches to allow the leaky gut to heal. Developed by a neurologist to heal her autistic son, based on the SCD Specific Carbohydrate Diet. High fat to heal and seal gut and to repair nervous system.

For some, foods can be replaced relatively quickly. In her FAQ, originator Natasha Campbell-Mcbride notes a special sympathy for those suffering w/ CFS type illnesses, and says here the healing will be the slowest. There are many similarities in the guts and other problems shared by autistic kids and those of us w/ ME/CFS/FM.

I had no idea of any food intolerances before starting the diet. I was vegetarian, terrified to start this animal food diet, but was choiceless, as life was unbearable. 3 days after beginning, my horrifically over-active nervous system calmed.
By 6 months I uncovered my histamine and sulfur intolerances by tracking my symptoms (facial eczema, rashes). DNA testing would reveal their genetic roots. It is unlikely I'll return those foods to my diet, although now I am including a very small amt of beans, which are high sulfur.

The diet was just the beginning for me. From there to understanding pyroluria , my genetic defects, the B12/folate deficiency which had undermined my life, and detox. I am a different person. Life-long insomnia, irritability, agitation, low threshold for frustration: Gone. I can think again. In 2.5 years my life has transformed.

Here's the FAQ page you can look through. It's not really so user-friendly, IMO. When you click on a topic, the answer may appear above where you were on the page. There are forums and many blogs available to assist w/ the diet. Best to you, ahmo
http://www.gaps.me/preview/?page_id=32

 

[xchocoholic]

You have a great ND. He/she is in agreement with what other integrative / functional doctors are saying. Googling paleo diet should show you this. From what I've seen that's the go to diet for healing because it eliminates common food intolerances and chemicals. I like cordain's or wahls version.

I improved dramatically from a gfcfsfcf + chemical free diet but it took a couple of years to feel healthy at rest. That was 2005-2008. I was starving non stop till then. Everything I ate for the first 6? Months other than smoothies hurt. I heard from other celiacs that I probably had full blown celiac by then. My doctor was useless.

I switched to a paleo/low oxalate diet in 2008 because I hadn't healed completely and it was recommended and I had kidney stones. Gf processed foods, whole gf grains and legumes were making me feel horrible. I suspect gluten cc (cross contamination ) was the problem. I over produce gluten antibodies according to my stool tests.

I just started experimenting with legumes and gf processed foods. So far so good. The improvement could be from taking DGL, enzymedica spectrum or time. Who knows ? I switched to save my energy and avoid OI/POTS from being upright while preparing foods.

In 2005 when I started the elimination diet I stopped feeling like I was buzzing within 24-48 hours. My narcolepsy / sudden irresistible urge to sleep disappeared within 7-10 days. My ataxia vanished after 1 year gf. ☺At some point my brain zaps stopped and the feeling that the floor was rolling under my feet stopped. I suddenly started sweating normally again.
My circadian rhythm returned. Etc etc etc.

I still have OI, hypoperfusion and pem but as a 58 year old celiac who ate a lot of gluten for 15 years AFTER getting sick with me/cfs (which included all the neuro symptoms listed above), I honestly don't expect to heal completely. My list of dx is overwhelming.

Tc ... x

 

[Gingergrrl]

Thank you so much to everyone for your detailed responses and info. I have decided to go ahead with the diet for the next three months as proposed by my ND. I see her again next Weds to go over it in more detail as we had so much to cover in my last appt and ran out of time.

I will be gluten free (which I already am) but will now also be sugar free, dairy free, yeast free, egg free, corn free, and soy free! The only things I will be able to eat are meat/poultry/fish, veggies, fruits, rice, lentils, beans... and water . I am going to ask if I can still have an occasional diet soda or diet ginger ale.

It seems very restrictive but at this point if it will help my CFS, it is worth it. She said in three months I repeat the food sensitivity test and may be able to add some things back in.

Does anyone have any creative foods/recipes given this new restrictive plan? Any info is much appreciated!

 

[xchocoholic]

I thought my diet was restrictive too until I learned about all the fruits and veggies I never knew existed. The internet is full of recipes that don't include common food intolerances. Various Non American cuisines are typically safe too. Indian, thai, ethiopian ( ask for gf teff bread), vietnamese, japanese, etc.

Restaurants that offer gluten free foods like carrabas, outback, etc are aware of other allergens too. Options can be bland tho because their chefs aren't aware of how to use spices or non traditional ways to make it taste good. I've had some meals out recently tho where the chefs knew how to cook delicious allergen free foods tho.

Eating this way has gotten much easier in the last 5 years.

Tc ... x

 

[place]

I have been gluten free for 4 months. I just went on a cruise vacation and caved In By the second day and have had the trots since then. Other than that I feel fine. I had done this treatment alone with a couple others and was not sure the gf was doing anything. Never had digestive issues in the past. As usual, another weird symptom....

 

[xchocoholic]

I have been gluten free for 4 months. I just went on a cruise vacation and caved In By the second day and have had the trots since then. Other than that I feel fine. I had done this treatment alone with a couple others and was not sure the gf was doing anything. Never had digestive issues in the past. As usual, another weird symptom....

"Trots". I have to remember that. ☺

From what I've heard your reaction is the most common for celiacs. I had the trots non stop back in 2005 and got down to appr 106 lbs before my dr finally suggested the elimination diet. It stopped immediately.

Funny / sad story ? ... I have the dq2 gene and tried telling my family what that meant. I have a relative who's doctor told her to take Imodium if she eats wheat. Guess who she listened to ? For some reason my relatives don't think we share genes.

Tc .. x