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Round And Round We Go

moonunit

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moonunit Apprentice
moonunit
Posted

Just posting in case this information helps someone... got my Enterolab results back and they say positive for gluten intolerance (and lactose intolerance) with no sign of Crohn's. Now I have nine opinions, and we're 3, 3, and 3.

BUT, something else has changed! As I started Week 9 of being gluten-free, something amazing happened. The D stopped! I have been walking, not running, to the restroom since last Saturday, and I've been doing so only 1-3 times per day instead of 5-7 times. All this time I've had ups and downs but never this many days in a row this healthy! It's so weird not to be chained to the restroom I feel like I'm walking out the door without my purse or something. Amazing. :)

But here's the kicker. I changed a couple other things at the same time as I got better. I stopped going to restaurants, thinking my cc risks were too high, AND I stopped drinking carbonated beverages. So maybe the gluten-free diet finally kicked in, or maybe with my resection I simply can't tolerate carbonation and have been unknowingly causing this all myself. Maybe I have an allergy to artificial sweeteners.

Then right in the middle of this experiment, the Enterolab results come back positive for gluten intolerance. Officially, we have three doctors who say Crohn's but not celiac, three doctors who say neither Crohn's nor celiac, and three test results (but zero humans) who say celiac/gluten intolerance but not Crohn's.

When I wasn't feeling any better on the diet, I was a huge skeptic. Now I'm a lay-scientist with a renewed interest in what might be fixing the problem. Whoa, maybe it CAN be fixed after all. One thing I do know: it's not a prescription drug curing me like all the docs said I'd need. I am not on ANY prescription meds. So something in my diet can fix the problems, at least temporarily. Is it going gluten-free? Is it carbonation? Artificial sweeteners in diet sodas? Was it my lipstick, the restaurant food, just coincidence?

Who knows. But if I can stay well, I'll do what it takes to keep this going. Whether the good times keep going remains to be seen. I just wanted to tell people who are on the diet for 6, 7 weeks that maybe keep trying, maybe in the end healthy will happen. I certainly never expected to wake up one morning and boom, have this many good days in a row, more than I've had in years. :)

P.S. -- Living off the amazing awesome goodies handed out at the celiac walk probably doesn't hurt, regardless of my gluten status! That stuff is fantastic and the walk was just wonderful! Attend one if you can!

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Ursa Major Collaborator
Ursa Major
Posted

Wow, I am glad for you! Maybe you have gluten intolerance AND can't tolerate carbonated drinks/artificial sweeteners? I have many intolerances, many of which would cause diarrhea. Gluten is only one of them.

Whatever you're doing now, keep it up, it's working!

nannyb Rookie
nannyb
Posted

Moonunit

Glad to hear that you are feeling better. I too had diagnosis of Crohn's but in my case they went from Crohn's to Ulcerative Colitis to Ulcerative Proctitis (sp?) What I don't have is a diagnosis of gluten intolerance but since I feel 100% better when I stay off the gluten even the lack of biopsy results won't convince me otherwise.

Personally I think that they will eventually find that Crohn's is a manifestation of gluten intolerance. If it can cause villi to die and rashs on the skin why not lesions in the colon and other areas in the digestive tract.

An large number of people seem to have been diagnosed with Crohn's and then celiac later.

NannyB

Guest greengirl
Guest greengirl
Posted
... got my Enterolab results back and they say positive for gluten intolerance (and lactose intolerance) with no sign of Crohn's.

Just wondering...how do you know that the Enterolab results showed no sign of Crohn's?

I'm in a similar situation - my Enterolab results show that I have 2 copies of the Celiac gene (DQ2) and elevated IgA. But I also have small intestinal ulcerations which could indicate Crohn's. I don't really have the symptoms of Crohn's, though, and since going gluten free I am much, much better with NO diarrhea at this point. My doctor doesn't know which it is and admits that the gluten could be responsible for the lesions - he just doesn't know.

NannyB - I was so glad to hear your theory on gluten intolerance manifesting as lesions, instead of villi atrophy, because this has been a suspicion of mine, as well. There is so much that is unknown - a lot more research needs to be done!!

Christine

ravenwoodglass Mentor
ravenwoodglass
Posted
Just posting in case this information helps someone... got my Enterolab results back and they say positive for gluten intolerance (and lactose intolerance) with no sign of Crohn's. Now I have nine opinions, and we're 3, 3, and 3.

BUT, something else has changed! As I started Week 9 of being gluten-free, something amazing happened. The D stopped! I have been walking, not running, to the restroom since last Saturday, and I've been doing so only 1-3 times per day instead of 5-7 times. All this time I've had ups and downs but never this many days in a row this healthy! It's so weird not to be chained to the restroom I feel like I'm walking out the door without my purse or something. Amazing. :)

But here's the kicker. I changed a couple other things at the same time as I got better. I stopped going to restaurants, thinking my cc risks were too high, AND I stopped drinking carbonated beverages. So maybe the gluten-free diet finally kicked in, or maybe with my resection I simply can't tolerate carbonation and have been unknowingly causing this all myself. Maybe I have an allergy to artificial sweeteners.

Then right in the middle of this experiment, the Enterolab results come back positive for gluten intolerance. Officially, we have three doctors who say Crohn's but not celiac, three doctors who say neither Crohn's nor celiac, and three test results (but zero humans) who say celiac/gluten intolerance but not Crohn's.

When I wasn't feeling any better on the diet, I was a huge skeptic. Now I'm a lay-scientist with a renewed interest in what might be fixing the problem. Whoa, maybe it CAN be fixed after all. One thing I do know: it's not a prescription drug curing me like all the docs said I'd need. I am not on ANY prescription meds. So something in my diet can fix the problems, at least temporarily. Is it going gluten-free? Is it carbonation? Artificial sweeteners in diet sodas? Was it my lipstick, the restaurant food, just coincidence?

Who knows. But if I can stay well, I'll do what it takes to keep this going. Whether the good times keep going remains to be seen. I just wanted to tell people who are on the diet for 6, 7 weeks that maybe keep trying, maybe in the end healthy will happen. I certainly never expected to wake up one morning and boom, have this many good days in a row, more than I've had in years. :)

P.S. -- Living off the amazing awesome goodies handed out at the celiac walk probably doesn't hurt, regardless of my gluten status! That stuff is fantastic and the walk was just wonderful! Attend one if you can!

I am so glad you are feeling better and not giving up on the gluten free diet. It takes time for a lot of us to get relief I am so glad you have stuck with it and it payed off. I was so happy when my D stopped I never expected my arthritis, fibro and neuro problems to be relieved, but they were also - it just took about 6 months to heal. My GI, after my diagnosis apologized and said my symptoms were not IBS symptoms but Chrons, (wake up with violent cramps and mucousy D every damn night at 2 am for 3 hours for 5 years after 10 years of severe daily IBS). I asked him why he didn't listen when I told him what was going on and he had no answer. Perhaps all the doctors in my small town had already clued him in that I was a hypochondriac. Anyway, I am glad you are listening to your body and so happy for you I could dance......................, well cat thinks I'm crazy cause I just pranced around the computer room for you. ((((((hugs)))))

moonunit Apprentice
moonunit
Posted
  • Author
Just wondering...how do you know that the Enterolab results showed no sign of Crohn's?

I got the Crohn's test from them at the same time. You're right, the celiac test would not indicate this... but since several doctors insisted that I had Crohn's despite all tests up to that point being negative, I figured the extra $50 for that test would be worth it in the grand scheme of things.

I still might have Crohn's (too? instead?) but perhaps it is in remission? Who knows. The whole thing is just a big guessing game anyway!

Thanks to everyone for the replies and good wishes! I'm really enjoying this feeling of renewed health, even if it does not keep going! :)

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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.

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

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      Contact them.
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