Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Ups And Downs 2 Weeks Into Gfcf Diet

terps19

Recommended Posts

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?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      32

      My journey is it gluten or fiber?

      I made it through the holiday w/o being glutened. I had my brother cook with gluten-free breadcrumbs and I didn't get sick. I baked cookies with gluten-free flour and had dry ingredients for cookies in ziplock bag. I also made gluten cookies as well and guess I did good washing to avoid CC. My wife also went to a french bakery and bought a gluten-free flourless...
    2. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      32

      My journey is it gluten or fiber?

      What do you mean it would not allow any celiac to eat gluten again. I think if this helps cross contamination when eating out at a non dedicated gluten-free restaurant this would be nice not to encounter the pains. But is their a daily enzyme to take to help strengthen the digestive system?
    3. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      High TTG-IgG and Normal TTG-IgA

      Hi, thank you for the reply. Unfortunately, no other antibody tests were ordered. I am a 32-year-old male. About two months ago, I ate pancakes and then developed severe diarrhea that lasted the entire day. At night, I became unconscious due to fluid loss and was admitted to the ER, where I received IV fluids. Two days later, I ate bread again and once...
    4. trents
      - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      High TTG-IgG and Normal TTG-IgA

      Welcome to the celiac.com community, @SamAlvi! Were there any other antibody tests ordered? Particularly, was there a "total IGA" test ordered to check for IGA deficiency. When people are IGA deficient, celiac panel IGA test scores, such as the TTG-IGA, are likely not valid. If a total IGA test was not ordered, I would request such to be done. Note:...
    5. Scott Adams
      0

      Homemade Gluten-Free Egg Drop Soup

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,844
    • Most Online (within 30 mins)
      7,748
    donnawebb265
    Newest Member
    donnawebb265
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      I made it through the holiday w/o being glutened. I had my brother cook with gluten-free breadcrumbs and I didn't get sick. I baked cookies with gluten-free flour and had dry ingredients for cookies in ziplock bag. I also made gluten cookies as well and guess I did good washing to avoid CC. My wife also went to a french bakery and bought a gluten-free flourless chocolate cake dedicated gluten-free it was out of this world. 
    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      What do you mean it would not allow any celiac to eat gluten again. I think if this helps cross contamination when eating out at a non dedicated gluten-free restaurant this would be nice not to encounter the pains. But is their a daily enzyme to take to help strengthen the digestive system? 
    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Hi, thank you for the reply. Unfortunately, no other antibody tests were ordered. I am a 32-year-old male. About two months ago, I ate pancakes and then developed severe diarrhea that lasted the entire day. At night, I became unconscious due to fluid loss and was admitted to the ER, where I received IV fluids. Two days later, I ate bread again and once more developed severe diarrhea. I ended up in the ER again and received IV fluids. In my country, Pakistan, doctors are unfortunately not very thorough, so they treated me for a stomach infection. I visited three or four doctors, including a gastroenterologist, but it seemed like they just wanted to keep me on medications and IV fluids. Eventually, I did some digging myself and started connecting the dots. For years, I’ve had excessive gas buildup and frequent loose stools, but I never paid much attention to it. I also cannot easily digest dairy products. Two years ago, I had a CBC test that showed iron deficiency. My doctor told me to eat more meat and said it was nothing serious. However, for the past five years, I’ve also had severe motion sickness, which I never experienced before. Whenever I get on a bus or in a car, I sometimes lose consciousness for 10–20 seconds and wake up sweaty, and occasionally I feel the need to vomit. After more research on the internet, I came across gluten and celiac disease, so I got two related tests (TTG-IgA & TTG IgG) done along with a stool test and another CBC. The stool test showed weakly positive blood. Ever since eating those pancakes and bread, I’ve had a burning sensation in my gut. My doctor reviewed my tests, he told me to completely stop eating gluten and started me on IV fluids for 20 days, saying that I had severe inflammation in my gut. It has now been two months since I quit gluten, and I’m still not sure whether this is celiac disease or gluten intolerance. I don’t really trust doctors in Pakistan, so I thought I might get some help here.
    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Welcome to the celiac.com community, @SamAlvi! Were there any other antibody tests ordered? Particularly, was there a "total IGA" test ordered to check for IGA deficiency. When people are IGA deficient, celiac panel IGA test scores, such as the TTG-IGA, are likely not valid. If a total IGA test was not ordered, I would request such to be done. Note: "Total IGA" goes by other names as well. I will include a primer on celiac disease antibody testing which does a good job in covering the nomenclature variations connected with the various tests. Elevated IGG scores can certainly indicate celiac disease but they are more likely than elevated IGA tests to be caused by something else.  
    • GlorietaKaro
      Am I nuts?

      By GlorietaKaro · Posted

      Thank you— yes, valid and essential— The issue either doctors is that every one I have tried to talk to about this has essentially rolled their eyes and dismissed me as a hypochondriac, which gets discouraging. I believe a diagnosis would help me to be taken seriously by doctors as well as being validating, but can carry on without it.    There are many, probably most people in my area of my age and gender, who avoid gluten, but many just avoid it casually— eating the occasional plate of wheat pasta or a delicious-looking dessert, or baking cookies with wheat flour for gatherings.  That is not an option for me. I don’t eat other people’s cooking or go to restaurants that do not have strict cross- contamination procedures. It can be boring and lonely, and people do look at me as if I am being a bit dramatic but weeks of symptoms after a single small exposure has taught me to respect my experience.    Thank you very much for your response— sometimes I just need to hear that I am not crazy—
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.