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

Waiting

missladyj

Recommended Posts

mushroom Proficient
mushroom
Posted

Pancreatic supplements sound like enzymes to help you digest your food. This is what the pancreas normally produces, but gluten seems to suppress its function and many, many of us on the forum take these to aid our digestive systems until our pancreas resumes its normal function.

Good luck on Monday.

  • 1 year later...
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


missladyj Newbie
missladyj
Posted
  • Author

So where we last left our hero she had a lot of blood work done, which showed nothing significant. Fecal fat test (gross) which showed more fat than it was supposed to so the doc said you have a malabsorption disorder. Okay great now what. So then we did a colonoscopy which turned up nothing. An endoscopy which turned up nothing. Then we did the pill cam endoscopy which showed that I have "nonspecific ulcers" in my small bowel. Okay great now what. So then we did a blood test for Kron's disesase as well as Ulcerative Colitis. Negative on that. Official diagnosis: malabsorptive disorder, nonspecific ulcers, and chronic hemmoroids. I was given no course of treatment, just told not to use ib profen because that would aggravate the ulcers and told to come back if I had any other problems.

Considering the doctor had no bedside manner, offered no real reasons or treatment...I haven't been back. I still have some stomach issues some weeks are better than others. Some days I go to the bathroom frequently other days I'm constipated. Every few weeks or so I have what I believe to be a hemmoroid attack. Painful bowel movement, blood on tissue, and the like. Well today. I was brought to tears by the painful bowel movement. It's only getting worse each time I have an attack. I haven't had much luck with topical creams and decided to talk to the pharmacist. Who politely as she could suggested I should see a doctor. The logical side of me knows she's right but the doctor I went to was such an ass%$@# that I don't have a fondness for visiting any doctors. She also suggested that I might have an intolerance to something and that I should look into it...well lady I said my doctor says I don't and that it's impossible to have a false negative. She gave me a look.

I know I need to put my big girl panties on and go. It's not getting better. It's painful. It makes me cry. And dammit it's not normal and topical freaking creams aren't working. I'm going to call my gyno in the morning to see if she has someone she can recommend because I am not going back to the ass%$@# to talk about my painful ass%$@#.

I have no idea if this is celiac but I figured if anyone would understand the frustration of knowing somethings wrong and not being able to figure it out...y'all would.

ravenwoodglass Mentor
ravenwoodglass
Posted

Have you give the diet a good strict try yet?

EnviroChick Newbie
EnviroChick
Posted

Sadly, I know how you feel. I posted on here recently about my situation, I didn't go overseas or anything, but I have the same problems!

My GI is useless, I've been tested for Celiacs twice and apparently "I'm fine". Had a sigmoidoscopy and still waiting for biopsy results but those will be negative for sure. I am anemic and I know I have other vitamin/mineral problems but my GP doesn't want to test me for them. Shes great eh!

I just started the gluten-free diet a week ago today, and it's kicking my butt. I'm still sick every day, tired as can be, and everything I eat wants out. So I started with my meds again today just so I can get through work and life!

I don't understand why your doctor put you on Flagyl for parasites, even tthough its obvious you're free of them. It just seems like a pointless thing that causes you suffereing.

I would like to add I've too noticed that my food comes out undigested, which is very weird to see. It has been better since the gluten free though.

With gluten free, when people say you have to eat whole-natural foods, they mean it. I eat rice, baked chicken, rice ceral (gluten free chex) and veggies/fruit. Thats it. No seasoning, nothing. Its extremely tough sincce you don't know for sure if all this pain is worth the trouble of eating gluten free, but when you have no other options and no where to turn for much help, it seems like the only thing left to do.

Hope you appt on monday goes good and hopeuflly the doctor will give you some guidance on what to do, and even if he doesn't, ASK HIM what you should be doing!! He is a doctor and they are educated to treat people, not sit there and ignore them!

Good luck!

missladyj Newbie
missladyj
Posted
  • Author

Have you give the diet a good strict try yet?

no I'm stubborn and wanted that positive diagnosis. I am nearly ready to say screw a diagnosis and just do it.

ravenwoodglass Mentor
ravenwoodglass
Posted

no I'm stubborn and wanted that positive diagnosis. I am nearly ready to say screw a diagnosis and just do it.

If you are done with celiac testing there is nothing to lose by doing the diet but the pain.

Fairy Dancer Contributor
Fairy Dancer
Posted

Try the gluten free diet.

I had a blood test taken by a dr recently, although it was by no means as comprehensive as yours lol, and that was normal. The only abnormal blood test I had was a mildly elevated cholesterol but not so elevated that it needs any treatment at this stage (other than maybe a healthier lifestyle lol). I never had any stool samples taken or a biopsy done though. Just the blood test.

All the same I have found that the fatigue, dizziness, gastrointestinal symptoms etc that I went to my dr about have improved some on a gluten free diet anyway (except when I ate some corn the other day lol). My system feels much cleaner in general without the wheat and grains and I have started losing weight again, which is great (as I am overweight) because my body was refusing to play ball and take the weight off prior to the gluten free diet.

It does not hurt to try it. Personally I have put myself on a whole foods diet and avoid both gluten and processed foods in general (except as the occasional treat if its a gluten free one). It works...

Hope you start feeling better soon!

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

Celiac.com Sponsor (A8-M):


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. Mari
      - Mari replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet official, the Health Director of...
    2. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac...
    3. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      Supplements for those Diagnosed with Celiac Disease

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together. Our bodies can make Taurine from meats consumed. Our bodies cannot make Thiamine and must consume thiamine from food. Meat is the best source of B vitamins like Thiamine. Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine...
    4. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      @Jmartes71, I went to Doterra's site and had a look around. The Doterra TerraZyme supplement really jumped out at me. Since we, as Celiacs, often have digestive problems, I looked at the ingredients. The majority of the enzymes in this supplement are made using black mold, Aspergillus! Other enzymes are made by yeast Saccharomyces! Considering...
    5. Scott Adams
      - Scott Adams commented on Scott Adams's article in Additional Concerns
      2

      Gluten Transfer from Biodegradable Tableware: What a New Study Found and Why It Matters (+Video)

      Thanks for mentioning this, and here is an older article on the topic:
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,543
    • Most Online (within 30 mins)
      7,748
    Jeanette K.
    Newest Member
    Jeanette K.
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

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

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Mari
      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      Are Lindt chocolate balls gluten free?

      By RUKen · Posted

      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
×
×
  • 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.