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Gluten Free 5 Weeks Some Symptoms Getting Worse

motheroftwins2010

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GottaSki Mentor
GottaSki
Posted

Yes, sadly some of us do get worse before we improve.  If you have not, remove dairy -- it is the most common intolerance for those with Celiac Disease.

 

Hang in there!

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jiggles Apprentice
jiggles
Posted

Hi again ,

when I couldn't get up from the sofa , I drank the broth from the chicken , please ask someone to boil up a chicken for you so you can at least drink the broth ,

also your dietician can they prescribe food drinks for you whilst you cannot eat , I had some prescribed and they did help ,

plenty of water and the chicken broth will help until your doctors find out what the problem is for you

x x jiggles

gilligan Enthusiast
gilligan
Posted

Wow!  We have a lot in common!  I recently posted a thread similar to yours asking for help.  I'm now six months out from diagnosis and I feel worse all the time!  And, like you, I continue to lose weight.  I haven't seen any blood, and I'm not in the bathroom quite as many times as you are, but other than that we are quite similar.  It seems like every week I discover something else that I can't seem to tolerate.  I've had two endoscopes a year apart.  The first showed "slight inflammation - non specific, and I was told that I didn't have celiac.  The more recent one "moderate inflammation", and this time I was told I tested positive. I can't find a protein drink either, so the dietician told me to try pea protein powder. I haven't tried it yet.  I've been drinking MuscleEgg for awhile.  You can order it online.  It's simply pasteurized egg whites that comes frozen.  I seem to tolerate it well.  I have an appointment with a new gi in a few weeks.  I'm hoping he can help figure out if there's an additional problem.  I hope you see some improvement soon.  Keep writing!  I'm so anxious (for both of us) to hear what you find out.

1desperateladysaved Proficient
1desperateladysaved
Posted

My nutrient levels fell somewhat after I went gluten free.  They have since gone up again.  Keep on it you should get somewhere!

 

D

motheroftwins2010 Rookie
motheroftwins2010
Posted
  • Author

Just an update for anyone who was wondering. My colonoscopy was completely normal so I was sent for a CT Scan to rule out lymphoma. I do not have lymphoma, however, during the CT scan they found inflammation near the end of my small intestine (not anywhere outside of the small intestine though) indicating Crohn's disease and recommended a colonoscpy to confirm. My GI, however, thinks the CT scan is a false positive because my colonoscopy was negative and has prescribed hysocyamine to stop the diarrhea. I am having a second opinion given by a separate hospital that has a highly regarded celiac program since I have many symptoms of crohn's including eye issues. I also dropped below the minimum sodium levels so I was tested for addison's disease too waiting on the results. My b12 also tanked and I am dumping more than half of my shot in 3 days or less so I was moved to every two weeks again. I think we are finally getting somewhere it's just slow going...

MGR Apprentice
MGR
Posted

I'll be thinking of you....

  • 3 months later...
motheroftwins2010 Rookie
motheroftwins2010
Posted
  • Author

This is old but I know when people google these or search the forums there aren't always follow ups when the problem was solved. We solved my problem, it was not crohn's or hidden gluten, I have fructose malabsorbsion as well as bit of a sorbitol intolerance. Ironically I figured it out at the gluten free expo because most of the samples were sweetend with HFCS or Fruit Juice and it left me sick as hell since I wasn't eating processed food the samples wreaked havoc on my insides even more so than day to day eating. I met with my celiac specialist GI shortly after and she confirmed it. At 4 months post diagnosis my ttg IgA went down and was a weak positive and both DGP's went back to normal/negative so I am following the gluten-free diet carefully. It is not SIBO it's just fructose malabsorbtion. So I am now Gluten free, dairy free, very low fructose/fructans, low sorbitol/polyols. Within 24 hours of going fructose and sorbitol free in addition to gluten free and dairy free I was feeling like a new person. Thank you for all of the advice here. Hopefully if anyone pulls this up with the same situation this info can help them.

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GottaSki Mentor
GottaSki
Posted

Very glad you found another piece of your puzzle and hope you continue to improve.

Thanks for the update.

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

      By knitty kitty · Posted

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

      By Jane02 · Posted

      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! 
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    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

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

      By trents · Posted

      Contact them.
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