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What To Do Now?

lizk

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lizk Rookie
lizk
Posted

I guess I am just mostly venting because I'm frustrated that I can't figure out what is wrong with me. Last fall I was having gastro issues (bloating, D, cramping) and also some skin issues - severly itchy bumps that would come and go. I went gluten-free (I realize now that was dumb before seeing a doctor) and the GI issues resolved almost completely except I was still having loose/soft stools and occasional undigested food. I went to a GI doc because of these issues (at this point it had been going on for about 3 months and I also still had random itchy bumps) just to be sure there was nothing else wrong and she couldn't find anything. Obviously she didn't do any celiac tests because I was still gluten-free at that point. She did say I had a slightly elevated folate level which could indicate bacterial overgrowth and also I was slightly deficient in vitamin D. Ironically by the time I had my GI appointment (literally that day), I had a "normal" stool and did for the couple days after. I had also cut out dairy for the past month or so.

So, I decided to start eating gluten again because I really didn't have any reason not to. Yes I felt better without it but I also thought maybe it was just a virus or bacterial infection or something that took a long time to get rid of. I am not so concerned with a definite diagnosis if it is celiac but I am more concerned with some diagnosis if it is NOT celiac if that makes sense, so I am back on gluten just to try to rule it out as a cause. I am still off dairy because I don't want to add both back in at this point, although I have had a little greek yogurt and small amounts of hard cheddar.

So here's what has happened over the past 10 days eating gluten. I have no pain really, but some bloating. I don't know what is "normal" for someone's stomach to bloat after they eat but in the morning my waistline is about 27 inches and then after breakfast it is about 29 1/2 - 30 inches. I have been eating Cream of Wheat for breakfast but this morning I had just a piece of whole wheat toast and a smoothie and my tummy was 30 inches.

I still have "loose" stools and I only go in the mornings. Usually the first one is just loose and unformed and then I may go again once or twice and those are considerably looser, and usually very thin.

I still have the itchy bumps but they are coming in different forms now. I still have the tiny blistery types ones occasionally but I am now getting bigger more bug bite-looking ones. I have two on each arm now and had one on each side of my abdomen earlier this week. They do not look like typical DH but I have no idea what they are. They have sort of like a little indentation in the middle and after they itch/burn they are also sore.

So I guess I am just confused and a little worried because obviously something is not right. It doesn't appear to be celiac but also there doesn't seem to be anything else wrong that shows up on any tests. I am temtped to go back to being gluten-free but even then I had the loose stools and tiny bumps. Maybe I didn't wait long enough? But if it is gluten wouldn't I be having more severe reactions now?

I know this is all rambling but it helps to just get out my frustrations!

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Metoo Enthusiast
Metoo
Posted

I would consider seeing a dermatologist at this point, your rash does sound like DH. I would ask a Dermatologist to biopsy it...I would tell them you had GI issues for months/years, and that they were unable to determine a cause, and that you went gluten free...and now that are adding it back in your rash is changing/worsening. Ask them to biopsy it (they should biopsy it along a active lession). I would also ask the dermatologist to do the blood test for celiac, a FULL panel.

lizk Rookie
lizk
Posted
  • Author

I would consider seeing a dermatologist at this point, your rash does sound like DH. I would ask a Dermatologist to biopsy it...I would tell them you had GI issues for months/years, and that they were unable to determine a cause, and that you went gluten free...and now that are adding it back in your rash is changing/worsening. Ask them to biopsy it (they should biopsy it along a active lession). I would also ask the dermatologist to do the blood test for celiac, a FULL panel.

Thanks for your advice! And thank you for reading my long post! :)

I think I will try to make an appointment with a dermatologist.

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    • trents
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By trents · Posted

      This is a common experience across the board with various brands of gluten-free bread products. Prices go up, size goes down. Removal of the egg component may be for the purpose of cost-cutting related to bird flu supply shortages or it may be catering to those with egg allergy/sensitivity, fairly common in the celiac community.
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      Living with Coeliac Disease since birth, Bread has always been an issue, never too nice, small slices and always overpriced, But Sainsbury's Free From White Sliced Bread seemed to me to be an exception with it's large uniform 12 x 12cm slices that had the bounce, texture and taste of white bread even after toasting with no issue that it was also Milk Free. Unfortunately Sainsbury's have changed the recipe and have made it 'Egg Free' too and it has lost everything that made the original loaf so unique. Now the loaf is unevenly risen with 8 x 8cm slices at best, having lost it's bounce with the texture dense and cake like after toasting resembling nothing like White Bread anymore. Unsure as to why they have had to make it 'Egg Free' as the price is the same at £1.90 a loaf. Anyone else experiencing the same issue with it? - also any recommendations for White Bread that isn't prescription? / Tesco's / Asda's are ok but Sainsbury's was superior.
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