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Ups And Downs 2 Weeks Into Gfcf Diet

terps19

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terps19 Contributor
terps19
Posted

Enterolab tests showed a sensativity to gluten and casien as well as having both genes for celaic disease. Soy, eggs and yeast colitis were all ruled out by enterolab; however, I do not know how accurate the colitis tests are.

History: Having trouble for about 5years, the last year being the worst of it (D everyday if I dont take Imodium, cramps, stomach pains, nausea, weight loss (20 pounds on 3 months). Before I saw a GI Dr., my grandma suggested I go gluten free (she was a nurse for 30 years). I went gluten-free and by the 4th day of going gluten-free (about 1.5 years ago) I had my first unassisted normalish BM in a long while. I went to a GI and I had to start eating gluten again to test for celiac disease. celiac disease tests came back negative, and biopsies of the colon showed mild inflammation. He tagged me as having UC when microscopic inflammation can mean many things (inflammation from the prep used for scope, infection, microscopic colitis, bacteria etc).

Moved from MD to AZ and got new GI. He wasnt convinced I have UC (none of the UC meds we have tried worked well (asacol, rowasa enemas, colazal)- which lead me to Enterolab tets because it is very common for people with microscopic colitis to have food sensativities especially to gluten. My GI threw the result of Enterolab out the window and that was that. I have a c scope set up for July 7th with a whole series of blood work over the next month and a half.

I have now been Gluten-free Casein-free for almost 2 weeks (I took a med with gluten in it day 9 and 11 and I felt bad the days after taking the med). There have been days where I have felt great and days like today when I am feeling badly.

Is it common to have these ups and downs at the begining of the diet? When should most of these ups and downs flatten out?

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connie p Newbie
connie p
Posted

Keep at it. Doctors only know what they know and Dr. Fine knows intestinal health! It wasn't until we tested with his service that we got the answers we needed to find true health. It started with my children but now we know as adults we both have the same sensitivites! Gluten and casein feel like the "double whammy" (as my friends call it.) But whenever we get a little by eating out or eating something someone prepared who doesn't understand the severity -- all symptoms, including behavior are back. It may feel bland and boring, but the way you start to feel will change your view of food for life! You're never too old to change a habit. But getting your doctor, any doctor, on board is a struggle. You may have to do some research to find an md that will support you. Drugs don't work -- food is the issue! Best wishes!

KaitiUSA Enthusiast
KaitiUSA
Posted

Hang in there...it takes time. Took me 8 months of ups and downs to get pretty much back to normal but some people take less time and some people take more time. Depends on many factors.

terps19 Contributor
terps19
Posted
  • Author

Thank you Kati and Connie-

I think going into the diet I was expecting the healing to come quick and easy without any ups and downs because I felt better going gluten-free 1.5 years ago within 4 days. But I was only gluten-free for a total of 6 days back then.

Obviously I was expecting too much.

Connie- What were your results to Dr Fine's tests? Did you test for soy, eggs and yeast, as well as the genes for celiac disease and colitis? I am worried that I have other intolerances, maybe corn or rice but usually people with those senativities (from what I have heard) usually are intolerant of soy, eggs, and/or yeast.

Kaiti- How did you find out about your intolerance? Do you know how badly damaged your intestines were? Dr FIne's tests showed that I had no damage which I am thankful for. Boy I cant imagine what it must feel like to have that intestinal damage.

connie p Newbie
connie p
Posted
Enterolab tests showed a sensativity to gluten and casien as well as having both genes for celaic disease. Soy, eggs and yeast colitis were all ruled out by enterolab; however, I do not know how accurate the colitis tests are.

History: Having trouble for about 5years, the last year being the worst of it (D everyday if I dont take Imodium, cramps, stomach pains, nausea, weight loss (20 pounds on 3 months). Before I saw a GI Dr., my grandma suggested I go gluten free (she was a nurse for 30 years). I went gluten-free and by the 4th day of going gluten-free (about 1.5 years ago) I had my first unassisted normalish BM in a long while. I went to a GI and I had to start eating gluten again to test for celiac disease. celiac disease tests came back negative, and biopsies of the colon showed mild inflammation. He tagged me as having UC when microscopic inflammation can mean many things (inflammation from the prep used for scope, infection, microscopic colitis, bacteria etc).

Moved from MD to AZ and got new GI. He wasnt convinced I have UC (none of the UC meds we have tried worked well (asacol, rowasa enemas, colazal)- which lead me to Enterolab tets because it is very common for people with microscopic colitis to have food sensativities especially to gluten. My GI threw the result of Enterolab out the window and that was that. I have a c scope set up for July 7th with a whole series of blood work over the next month and a half.

I have now been Gluten-free Casein-free for almost 2 weeks (I took a med with gluten in it day 9 and 11 and I felt bad the days after taking the med). There have been days where I have felt great and days like today when I am feeling badly.

Is it common to have these ups and downs at the begining of the diet? When should most of these ups and downs flatten out?

teankerbell Apprentice
teankerbell
Posted

I was diagnosed in Feb. and I am still up and down. I make a lot of mistakes and purposely do stuff to cause problems. It is very difficult to give up some of the things you love to eat.

terps19 Contributor
terps19
Posted
  • Author

Wow teank you are doing the SCDiet? That is hardcore! Do you not think the Gluten-free Casein-free diet was good enough? I have heard many good things about the SCDiet in people with crohns, ulcerative colitis, celiac disease and IBS.

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connie p Newbie
connie p
Posted

Personally in our family I suspect soy. We have tried both the silk milk and the ice cream and get the same results from both. My girls and I have respiratory symptoms when we mistakenly have gluten or casein....lungs tighten, sinus problems, asthma, frequent pneumonia, along with gas and bloating and loose stools. Once gluten and casein are eliminated, it will be easier to see if you are affected by more. I am thinking of keeping a health journal, but right now we eat as a family so much the same with little variety that it is not hard to pinpoint the "mistake." Honestly, the food is expensive and we have had what feels like hundreds of tests. I just don't want to have them do anything else right now! Let me know if you have other questions! It takes a while for the intestine to heal. I know some of their sensitivities will disappear with healing.

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