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Coping With The Beast


Northern Celiac

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Northern Celiac Newbie

Hi everyone, I have read and posted lots but I wanted to get people's feedback about liquid iron as opposed to ferrous gluconate pills.I have really bad annemia from celiac disease and my ferritin levels had been chronically low. The biggest symptom I would get from the annemia is being constantly chilled to the bone. Another problem I also have is trying to gain weight. At the time of my diagnosis I was approx 130lbs(not sure cause i was too damn scared to get on the scale) I stand 6"5" so people can see how serious the problem is. I follow the gluten-free diet to the letter, keep a diary,and consult with my dietician and family doctor constantly.

When I got the pathology report I was diagnosed a 3(destructive) on the marsh scale.

I'd appreciate any feedback

Thanks in Advance

Mike


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Hi Mike,

I only take liquid vitamins, taking the regular tablets is pointless for me because I just don't absorb them. How long have you been gluten free? I remained the same weight for the first six months or so, but then gained about 7kg (a lot for someone who is 5ft1) over the next six months. I have been gluten-free for about a year and a half and am now finally at a normal weight for my height...I guess what I'm saying is that it takes different people varying amounts of time to get back to being healthy. Good luck.

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    • Aretaeus Cappadocia
      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
    • nancydrewandtheceliacclue
      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
    • trents
      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    • nancydrewandtheceliacclue
      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
    • Russ H
      The sensitivity of people with coeliac disease varies greatly between individuals. The generally accepted as safe limit for most people is 10 milligrams per day. This equates to a piece of bread the size of a small pea. Some people report that they are more sensitive than this, but others can very occasionally eat a normal gluten containing meal without reacting. I don't think that touching or throwing bread around would lead to you ingesting enough to cause a reaction. There are case reports of farmers with coeliac disease reacting to the dust from gluten-containing animal feed but they were inhaling large amounts of dust over a long period of time in barns. Perhaps you episodes are caused by a reaction to something other than gluten? Have you had your antibody levels checked to see whether you are still being exposed to gluten?
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