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Hope I Have Celiac...what Else Could It Be?

jennyo

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jennyo Newbie
jennyo
Posted

My blood panel came back negative, but I do have one of the genes, so I went for a biopsy last week. I'm so hoping for celiac disease because if not, we're back at square one trying to get some kind of cause for what's wrong with me. I'm worried that I didn't eat enough gluten before the biopsy. I was planning on it, but I got the biopsy scheduled so quick I didn't get a chance to beef up my gluten intake. The night before I ate about 10 ginger cookies though so hopefully that did enough damage!

So here's my question. I obviously have some kind of malabsorption going on. I have lost about 30 lbs over the last few years and eating more than ever. No GI symptoms though. Infertility issues, and when I finally did get preg via IVF, my poor baby wasn't thriving in the womb. They had to induce early because he wasn't growing enough. It appeared that I was malnourished, but I am the healthiest eater of anyone I know! Any suggestions on what else it could be if not celiac??? Any ideas would be greatly appreciated. I feel like I"m dying here, and I'm so embarrassed to be around family. I have no friends left either because I avoid situations where people will comment about me looking sick, or being so skinny.

I also have low red blood cell count, low white count, and low platelet count. Literally, I am fading away! :huh:

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ShayFL Enthusiast
ShayFL
Posted

I would try gluten free diet no matter what the tests show. What do you have to lose? It sounds like nothing.

Also avoid dairy and soy for 3 - 4 months. Let your body heal. It can.

jennyo Newbie
jennyo
Posted
  • Author
I would try gluten free diet no matter what the tests show. What do you have to lose? It sounds like nothing.

Also avoid dairy and soy for 3 - 4 months. Let your body heal. It can.

How did you know how to do all that? Your own research or did you see a holistic nutritionist or someone? I think I do definitely have candida too -- I did a home test. I was going to wait and see if I got a celiac diagnosis and then do a candida cleanse too. But, there is definitely something else going on. I plan on going gluten-free regardless. But, I do so want some kind of diagnosis, even if it's an allergy or something. Thanks for the reply! (...hope I'm posting this in the right place--still new at this)

*lee-lee* Enthusiast
*lee-lee*
Posted

were you gluten free before the blood work? that'll cause a negative result just like it would the biopsy.

jennyo Newbie
jennyo
Posted
  • Author
were you gluten free before the blood work? that'll cause a negative result just like it would the biopsy.

No, I have never gone completely gluten free for more than a day. I would say "gluten-light." Meaning, no cereal in the AM, but still a sandwich for lunch. Maybe 2-3 glutens a day for the month before the tests and biopsy. Is that enough to still show damage? I've been "sick" for at least 10 years so there has been plenty of damage over the years. Hopefully that'll still be there despite toning down the intake recently.

*lee-lee* Enthusiast
*lee-lee*
Posted

i'm no expert...but i think you can have a false negative and still have Celiac. did the doctor say anything after the biopsy? mine wouldn't let me leave the hospital before he briefly reviewed his findings (which was no visable damage but the samples were being sent off to a pathologist for further inspection). he also gave me a print out which included pictures of my insides - kinda gross but cool if you like those types of things!

jennyo Newbie
jennyo
Posted
  • Author

False negatives--how annoying! She reviewed the findings with me after the endoscopy, which was the same --no visable damage but sending it off. Oh yeah, and acid damage from a hiatal hernia (great). Anyway, can they usually see damage at the surface? I'll be so bummed if the biopsy comes back negative.

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*lee-lee* Enthusiast
*lee-lee*
Posted

i'm not sure what they can and can't see when they're actually doing the procedure.

i cried when i got the negative result back. the last thing i did was test for the genes, which i have 1 of. Still not enough for an official diagnosis but i feel so much better not eating gluten so i've come to grips with it.

does your doctor have any other ideas if they rule out Celiac?

jennyo Newbie
jennyo
Posted
  • Author

I don't think she knows what to do if it's not Celiac. I don't know, she said something about referring to a nutritionist to see if I'm eating enough calories, which means I guess she thinks I'm lying about how much and how healthy I eat. Plus, what can explain the low blood cell counts and low platelet counts? It definitely looks like some kind of autoimmune thing to me. I'm hoping someone on here might have some ideas of where to go next. The Hematologist is pretty much done with me, she sent me on to the GI. If it's not a GI issue, I don't know...

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

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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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