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Ava rose

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Ava rose Newbie
Ava rose
Posted

I would really like to hear what symptoms others have experienced before going gluten-free? My tummy feels like I have just eaten the biggest, fattest meal, and the upper portion of tummy, just hurts. But I have not eaten but a salad. Pretty scared to eat truthfully. Have endoscope with biopsie in ten days. My deamidated gliadin Abs, IgG was spiked to 61 s/b below 19. Other two were negative. Please share what you went through, so I don't feel so alone.

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UKGail Rookie
UKGail
Posted

Hi Ava Rose - just a quick note to say welcome. Please keep eating lots of gluten (supposedly at least the equivalent of 3-4 slices of bread per day) until your biopsy. I made the mistake of eating gluten light in the few weeks before my biopsy as I couldn't bear it any longer, and my biopsy was negative.

Once the biopsy is over, then you can give the gluten free diet a proper trial to see how it helps you.

I have been gluten free for nearly 6 months and I still hardly ever eat salad and not much raw fruit. Not because it has gluten in it, which obviously it doesn't, but because my damaged digestive system finds it simply too much like hard work. I find I am much more comfortable in sticking to cooked vegetables, and plain, simple foods while my body is still recovering.

Even if your biopsy is negative, do give the diet a proper trial as many of us have felt much better for it, despite the current tests coming back negative. Do use the search facility on this board for further information on your particular symptoms and problems.

Best wishes.

Honey015 Newbie
Honey015
Posted

Hi, i am new here too, and so pleased i have found all these lovely people! People have already been helping me, so i am going to spread the love and try and help you! I have not been diagnosed by a doctor, and have had a negative blood result, but i think he is wrong, quite frankly!!! My result was for an anti endomysial test, following just one week of eating gluten, after a month of being gluten free, and the result literally just said "neg", no numbers or anything, so I don't know what the specific result was.

This could be quite a long list of symptoms (and apologies if there is 'too much information'!).......diarrhoea for weeks at a time, daily. Same colour, same smell (bad!), greasy (slides down the sides of the toilet, and leaves 'trails' even under the water after flushing. Sorry!). Horrific gas. Painful trapped wind. Constant bubbling, gurgling, groaning stomach. Nausea after eating that can last for hours. Feeling full and uncomfortable (like you describe) after eating, that can last for hours. Insanely itchy, blistery, bumpy rashes on backs of hands and elbows. Anxiety. Panic attacks. Skin pigmentation changes on forehead and cheek. Bloating. Raised MCV levels (my blood cells are enlarged. Can be caused by vitamin B12 deficiency, which can be caused by celiac). Tired all the time, even after nine hours solid sleep. Lack of concentration. Hives. And I'm sure there are a few other things that I can't keep track of without my list!!!

So many things here that i had no idea could be linked to celiac disease, and i have had many open-mouthed, "oh my god" moments while researching and linked something. Pretty much ALL of these things went away on a gluten free diet, especially the digestive things, the anxiety things and I had loads more energy. And yet my doctor says I am not celiac, because I am not anaemic and have not lost any weight. Mmm hmmm. I really don't see how that delightful list could be anything else, but he won't put me off that easily!

I have also felt scared to eat anything. When I was gluten free, I felt sooo much better, I was scared to eat in case I got 'glutened' by mistake. It can be hard to get used to deciphering labels and things, and I've eaten things i thought would be safe, had a reaction, then googled whether they have gluten in, and they have.

I hope things work out for you in what seems for most of us, to be a drawn out, frustrating process. Good luck, and I'd love to know how your biopsy and endoscopy go (in case I have to have one!). Hope you feel better soon.

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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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