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

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

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

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

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
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

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

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

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.

  • 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. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

    2. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

    5. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748

    Klairep
    Newest Member
    Klairep
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • knitty kitty
      @catnapt,  Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.   You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten. This explains it well: Lectins, agglutinins, and their roles in autoimmune reactivities https://pubmed.ncbi.nlm.nih.gov/25599185/
    • knitty kitty
      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg).   Both are gluten free and free of other allergens.  I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25".  It's gluten and allergen free and made in the USA.  It's a powder form of Vitamin A.  I was having trouble digesting fats at one point, but found I tolerated the powder form much better and have stuck with it since.   Tryptophan and Vitamin A help heal the intestines as well as improves skin health.  I get Dermatitis Herpetiformis and eczema flairs when my stomach is upset.  So I'm healing the outside as well as the inside.   I take one 1000 mg Tryptophan before bedtime.   With the Thiamine HCl, take 100 mg to start.  If you don't notice anything, three hours later take another. You can keep increasing your dose in this manner until you do notice improvement.  Remember not to take it in the evening so it won't keep you too energized to sleep. When I first started Thiamine HCl, taking 500 mg to 1000 mg to start was recommended.  If you've been thiamine insufficient for a while, you do notice a big difference.  It's like the start of a NASCAR race: Zoom, Zoom, turn it up!   This scared or made some people uncomfortable, but it's just your body beginning to function properly, like putting new spark plugs in your engine.  I took 1000 mg all at once without food.  It kicked in beautifully, but I got a tummy ache, so take with food.  I added in Thiamine TTFD and Benfotiamine weeks later and felt like I was Formula One racing.  So cool.  You may feel worse for a couple days as your body adjusts to having sufficient thiamine.  Feels sort of like you haven't cranked your engine for a while and it backfires and sputters, but it will settle down and start purring soon enough.  Adjust your dose to what feels right for you, increasing your dose as long as you feel improvement.  You can reach a plateau, so stay there for several days, then try bumping it up again.  If no more improvements happen, you can stay at the plateau amount and experiment with increasing your Thiamine TTFD.  It's like being your own lab rat.  LoL Yes, take one Benfotiamine at breakfast and one at lunch.  Take the B Complex at breakfast. Take the TTFD at breakfast and lunch as well.  I like to take the vitamins at the beginning of meals and the NeuroMag at the end of meals.   You may want to add in some zinc.  I take Thorne Zinc 30 mg at breakfast at the beginning of the meal.   Are you getting sufficient Omega Threes?  Our brains are made up mostly of fat.  Flaxseed oil supplements, sunflower seed oil supplements (or eat the seeds themselves) can improve that.  Cooking with extra virgin olive oil, avocado oil, or coconut oil is also helpful.   @Wheatwacked likes phosphotidyl choline supplements for his Omega Threes.  He's also had dramatic health improvement by supplementing thiamine.  You're doing great!  Thank you for sharing your journey with us.  This path will smooth out.  Keep going!  
    • catnapt
      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.  
    • catnapt
      I wouldn't consider this lucky. I can NOT tolerate the symptoms. And I googled it and I was not even getting 10 grams of gluten per day and I was extremely ill. They'd have to put me in the hospital. I'm not kidding.   I will have my first appt with a GI dr on March 4th   I will not eat gluten again - at least not on purpose   they are going to have to come up with a test that doesn't require it. 
    • xxnonamexx
      What Thiamine Hydrochloride brand do you take? Is it like the other vitamins I have added? What brand Tryptophan and amount do you take. Thanks
×
×
  • 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.