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Hi From New Zealand

JT-NZ
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JT-NZ Newbie
JT-NZ
Posted

Hi There, 

I am a 35 year old male from New Zealand. From being a teenager I have always had bowel movement issues, cramps every now and then and depression. For as long as I can remember I have had these issues. But In the past two years I have been getting increasing pains in the right side of my body, just under my ribcage. I sometimes get small white itchy dots on my fingers, Ive read this could be Dermatitis herpetiformis. In the past in my stools I have had blood present but this is quite rare. I've had blood tests and ultrasounds and nothing has ever shown up. When I was younger I had a colonoscopy and nothing came from that and about 3 months ago I went and saw a GP and they referred me to have an ultrasound to see if I had gallstones or something wrong with my gallbladder, at this time I was super happy! I thought wow this could be over! All the symptoms I've had for all this time could stop, but this scan didn't show anything abnormal. 

In the past few weeks I have also started getting reflux almost like something is stuck in my throat. I have been given Omeprazole to help those symptoms - But today as an example I feel like I have a rubber band around my torso, with the majority of the pain I have just to the right of my stomach.  I feel super bloated, like I  have had way too much to eat. 

I went back to the doctors today and requested specially a blood test for either ruling out or confirming I have celiac. This morning I had some toast for breakfast with some spread, and for lunch I had one slice of fruit toast. So I am hoping later this afternoon when I go take these blood tests something shows up! 

The reason why I have asked for this is I have been reading about some of the symptoms, obversely Dr google and online fourms are not a place to get a diagnosis but i'm interested to see if anyone agrees with me that I could be on the right path to discovering what's wrong with me?

Love to read any of your comments or feedback; or some ideas on what I should be asking my GP

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trents Grand Master
trents
Posted

A couple of meals with gluten in them is not enough to ensure a valid celiac antibody test result.

The guidelines for the  antibody test is the daily consumption of gluten in the amount equivalent to two slices of wheat bread for 6-8 weeks leading up to the test. So if you have been significantly cutting back on gluten in recent weeks the test results may give a negative result.

JT-NZ Newbie
JT-NZ
Posted
  • Author

I have not reduced or changed my diet in the past few weeks or even months. So I am still very hopeful these blood tests come back with something 

Scott Adams Grand Master
Scott Adams
Posted

Your symptoms could be due to untreated celiac disease and/or non-celiac gluten sensitivity, so it's good that you're getting tested for it. Interestingly the part about feeling like something was stuck in your throat reminded me of my daughter's primary symptom, and the pain in the lower-right side was a symptom I had for years before I was diagnosed.

Should the tests end up negative, you could still have NCGS and would just need to try out a gluten-free diet to determine this, however, keep eating gluten until all testing has been completed.

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  • Posts

    • PixieSticks
      Working in a kitchen with gluten?

      By PixieSticks · Posted

      Hi yes! I was diagnosed 10 years ago through a biopsy. I’ve been gluten free ever since but no one I’m around is gluten free. I sometimes wore a surgical mask in the kitchen. but I believe particles were still getting through. I’ll definitely look into n95 instead. thanks for the reply. 
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      By BoiseNic · Posted

      Ya I used to react to iodine, but it doesn't bother me anymore after strict adherence to a gluten-free diet for many years now. I am happy to report that for the first time ever in my life, a probiotic formula is not making me break out, but actually seems to be helping. The strains in this formula have been specifically tested to help with skin issues. It is gluten and dairy free also. 
    • knitty kitty
      Feeling ill

      By knitty kitty · Posted

      @Whyz, I take a combination of Thiamin (Benfotiamin), B12 Cobalamine and Pyridoxine B6 for my pain and headaches.  Really works well without hurting the digestive tract.  Riboflavin B2 also helps with migraines.  Most newly diagnosed people have vitamin and mineral deficiencies.  Check with your doctor and nutritionist.   If you follow the updated gluten challenge guidelines, you can wait until two weeks (minimum) before your appointment, then eat lots of gluten, like six slices of gluten containing bread or "name your poison".   Here's the Updated Gluten Challenge Guidelines: Recommended intake of gluten should be increased to 10 grams of gluten per day for at least two weeks. Or longer. While three grams of gluten will begin the immune response, ten grams of gluten is needed to get antibody levels up to where they can be measured in antibody tests and changes can be seen in the small intestine.   Keep in mind that there are different amounts of gluten in different kinds of bread and gluten containing foods.  Pizza crust and breads that are thick and chewy contain more gluten than things like cake and cookies.   References: https://www.beyondceliac.org/celiac-disease/the-gluten-challenge/ And... Evaluating Responses to Gluten Challenge: A Randomized, Double-Blind, 2-Dose Gluten Challenge Trial https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7878429/?report=reader  "In our study, limited changes in Vh:celiac disease (villi height vs crypt depth - aka damage to the small intestine)  following 14-day challenge with 3 g of gluten were observed, in accordance with Sarna et al.  While the 3 g dose was sufficient to initiate an immune response, as detected by several biomarkers such as IL-2, the 10 g dose was required for enteropathy within the study time frame. Based on our data, we would suggest that gluten challenge should be conducted over longer durations and/or using doses of gluten of ≥ 3 g/day to ensure sufficient histological change can be induced." Keep us posted on your progress!
    • Scott Adams
      Advantages vs. Disadvantages of having an official Celiac diagnosis

      By Scott Adams · Posted

      I don't believe that existing life insurance policies require such notifications--health checks are typically done before such policies are obtained. I believe it would primarily affect any new policy you get, and perhaps any policy renewal.
    • Scott Adams
      Feeling ill

      By Scott Adams · Posted

      You could go gluten-free now, and then start eating lots of gluten for at least 2 weeks before your endoscopy--just be sure to tell your doctor about this beforehand. If your symptoms go away on a gluten-free diet, it is further evidence of celiac disease and/or non-celiac gluten sensitivity.  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.  
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