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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
      Positive biopsy

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      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
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      Fruits & Veggies

      By knitty kitty · Posted

      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
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      By knitty kitty · Posted

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Positive biopsy

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    • pothosqueen
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      26F!
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