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

Biopsy Results Within Normal Limits?


Perthgirl

Recommended Posts

Perthgirl Newbie

Hi new to this forum and feeling confused...

Been seeing a GI/Hepatologist for 6months with liver problems. Lots of leisions of different kinds.. He did full blood tests of everything... Came back with extremely iron deficient. He felt it was so low there must be a reason behind it (bleeding somewhere) and recommended a colonoscopy and endoscopy.

Due to me already having a 3 day stay in hospital earlier in the year with diverticulitis infection and having already gone down the colonoscopy route with the surgeon I was under with no outstanding problems, just diverticulitis, we just did the endoscopy..

The GI's thoughts were ulcer or celiac.. This is when I thought things started to make sense because I had been having many GI problems for awhile and I do have an uncle and aunty who are celiac. We did the endoscopy five weeks ago and have finally got results as "within normal limits". I had had way enough of all the stomach problems I was having, toilet 4 or 5 times a day, noisy stomach, bloated to the point people on the train offered me seats thinking I was pregnant.. so I stopped eating wheat and trying to avoid gluten.. seen a marked improvement..

The other thing is my Aunt believes I could not be celiac because I am very overweight and my cholestrol is sooo high 8.1.. Any advise please I feel like I'm spinning in circles... :(


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



Celiac.com Sponsor (A8-M):



lizard00 Enthusiast

Welcome to the Forum!! You will find lots of support here!!

Sorry to hear about all of your struggles! The tests for Celiac are pretty notorious for being negative. And even with an endoscopy, a biopsy can miss the part of your intestine that has been affected. There's 22 ft (if memory serves me correctly) of small intestine, so that's a possiblity. Have you actually seen the results of your tests? I would suggest you get a copy, if possible.

And there's a large percentage of Celiacs who are actually overweight, not under. It's the whole "starvation" thing. When your body thinks its starving, because it's not absorbing many of the nutrients, then it hangs on to anything that is does get... hence the weight issue. I bet if you remain gluten-free you'll begin to start losing weight.

How long did you go gluten-free and are you still? If you saw marked improvement, stick with it. Dietary response is just as valid as any test. Many of us are self diagnosed (myself included) because of inconclusive tests, but we know that gluten is poison to us. So, I would encourage you to remain gluten-free for longer and just watch things get better!!! :D

RiceGuy Collaborator

I agree completely with lizard00's comments. So I'll just add my encouragement to stick with the diet, and see how much better you feel. And yes, the extra weight might easily diminish as your recovery progresses.

Welcome to the board!

ravenwoodglass Mentor

The diet is the truest test there is. Stick with it and welcome.

skichikk18 Rookie

I also was not officially diagnosed by the doctor. I had so many tests done becuase of over year straight of diaharria. My endoscopy came back negative as did my blood test. My mom has crohns disease and we thought maybe that but every test they did, and they did a lot, came back negative. He suggested trying a gluten free diet to see how I felt. After about 2 weeks on it I felt great and have been gluten free since Jan 1. I dont have the diaherria anymore and no more crazy bad stomach pain and cramping. My hair stopped falling out and i stopped losing weight. Before I went gluten free I was bairly eating because everything went straight through me (5-10 times a day in the bathroom). I go back to my dr in March to see what he has to say, but I feel so much better on this diet I wouldn't imagine he would have me stop. I finally have energy again also, it is great. I am also hoping this will help me get pregnant as I have been seeing a specialist for about 2 1/2 years for that also.

Perthgirl Newbie

Thankyou so much for the warm welcome and encouragement... :)

I have only been following the diet for a couple of weeks but have felt such a marked improvement I have decided to keep going despite the results of the biopsy as I do not want to go back to how I was feeling before.. I have gone from going to the toilet 5-6 times a day to only the once a day, which I cannot remember having been like that for years!!! and my stomach is not as bloated up as it has been and the cramping and noisy stomach has improved. My energy levels are still a struggle but with my iron so low I am prepared it could take some time to get those back up..

I am glad I found this forum which is full of such wonderful information and support... :D

ravenwoodglass Mentor
Thankyou so much for the warm welcome and encouragement... :)

I have only been following the diet for a couple of weeks but have felt such a marked improvement I have decided to keep going despite the results of the biopsy as I do not want to go back to how I was feeling before.. I have gone from going to the toilet 5-6 times a day to only the once a day, which I cannot remember having been like that for years!!! and my stomach is not as bloated up as it has been and the cramping and noisy stomach has improved. My energy levels are still a struggle but with my iron so low I am prepared it could take some time to get those back up..

I am glad I found this forum which is full of such wonderful information and support... :D

Glad to hear you are listening to your body. You should think about getting some sublingual B12, that should help a great deal with energy and other issues. So happy to hear you are on your way to recovery!


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



Celiac.com Sponsor (A8-M):



ksymonds84 Enthusiast
Thankyou so much for the warm welcome and encouragement... :)

I have only been following the diet for a couple of weeks but have felt such a marked improvement I have decided to keep going despite the results of the biopsy as I do not want to go back to how I was feeling before.. I have gone from going to the toilet 5-6 times a day to only the once a day, which I cannot remember having been like that for years!!! and my stomach is not as bloated up as it has been and the cramping and noisy stomach has improved. My energy levels are still a struggle but with my iron so low I am prepared it could take some time to get those back up..

I am glad I found this forum which is full of such wonderful information and support... :D

welcome to the board! I am glad you are staying with the diet. IMO the diet is the best diagnostic tool when other tests are questionable. I am also enjoying the one trip a day to bathroom :D

kathy

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 Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    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)

  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.