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Hi, I'm New -- American Living In The Uk And Introducing Myself!


littleburgy

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littleburgy Rookie

I'm new to this forum. I've decided to register here because I have realized over the weekend that I might have Celiac disease and I'm going to be talking to a doctor next week. Personally, I find it a shock to even type it out. At the very least, if it isn't celiac's, something is going on with what I am eating. At the very least, I believe it involves gluten. 

 

One of my brothers' in-laws had it, and I was always under the impression that it was just something extremely rare. I had my own health issues but mine didn't quite match hers, and she's not a blood relative, so I just figured I was in my own boat. I just needed to figure out what boat I was in. Truth be told I actually didn't know a lot about the disease.

 

For much of my life, I had hypothyroidism. I also had eczema. As I grew older I was also diagnosed with depression and an anxiety disorder. My eczema did subside when I was in my late teens and 20s. But then after my mother died in my late 20s, a few months later the eczema returned. I'm not sure if stress triggered something, or if it was just part of the aging process.

 

Off and on these past 10 years, a few times I tried candida diets. These involved strict diets with no grains whatsoever, and whatever I went through them, my eczema disappeared. But I often abandoned these diets because they were expensive and I was going through grad school or in transition between work.

 

In the past few years, the last 2 in particular, I've had skin problems head to toe. Standard atopic dermatitis, but also "chicken skin" on my arms (had this as a child as well) -- but most irritating: a third kind of skin problem that seemed different than my usual eczema, it was these ulcer-like spots all over my butt, elbows, knees, calfs and ankles. These wounds healed very slowly and often would get infected. This I believe may be DH but I have no formal diagnosis of it yet.

 

I also have been diagnosed with anemia in the past and issues with rock solid stools and hemorrhoids. 

 

Last week after just feeling awful I tried the "strict" diet again. I didn't believe it was candida, but something is going on. I wasn't necessarily trying to see if it is celiacs, but even just seeing if it's allregies. After a week of cutting out the gluten, my eczema has cleared up for the most part, the clearest it's been in 10 years. There's a few patches left but it's still a vast improvement.

 

What's more, in the past year or so I've also experienced some erosion on my teeth, which is completely unheard of with me, all my life I had very strong, healthy teeth -- running in my dad's side of the family.

 

I guess yesterday just thinking about everything it dawned on me that I might have Celiac's I'll have to check this out.

 

So that leaves me here. I do realize that in order to get tested, I'll have to return to gluten for a few weeks. I look forward to learning more. Hopefully I will find out what's going on. :(


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cyclinglady Grand Master

Welcome!

Wow! it sure sounds like celiac disease could be your problem. Here is a link to the University of Chicago's celiac website regarding testing and gluten challenges:

Open Original Shared Link

I would advise that you take complete celiac testing panel. I was only positive on just one test and it was not one of the more popular on the panel when doctors and insurance companies are trying to reduce costs. If I had not had the full panel, I would not have been diagnosed with celiac disease.

Search the DH section of the forum for tips on how to deal with the rash and how to biopsy the skin. There is a definite procedure and it is very tricky.

Good luck and keep us posted!

LauraTX Rising Star

Welcome to the forum!  Cyclinglady has left you some great info and links already there, so I don't have much to add there.  But let us know how everything goes!

littleburgy Rookie

The other issue is that I suspect I might also be developing issues with dairy. At first I thought "But I've never had lactose intolerance!" but then I just read that dairy intolerance can also develop over time with the celiac disease.

 

I'm going strictly diary free this week to see how I feel.

 

I'm in the UK on NHS so I'll probably have a while before I get any blood testing... and it will be a separate appointment in a few weeks anyway. I recall in the US I could get blood tests for thyroid right there but here I've had to do that separately, so I expect it would be the same. :wacko:

 

At the very least I have a doctor that I trust will listen to my concerns. The more I'm reading the more it feels like some puzzle pieces might be fitting together. I may be in for a journey but even just solving a mystery would make me feel better.

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    • trents
      So, you had both and endoscopy with biopsy and a colonoscopy. That helps me understand what you were trying to communicate. No, no! It never occurred to me that you were trying to mislead me. It's just that we get a lot of posters on the forum who are misinformed about what celiac disease is and how it is diagnosed so I need some clarification from you which you were so gracious to give.
    • barb simkin
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      So, I'm a little confused here. I understand you to say that you have not been officially diagnosed with celiac disease. Is this correct?  You have had genetic testing done to check for the potential for developing celiac disease and that was positive. Is this correct? I think you meant to type "gluten sensitivity" but you typed "gluten insensitivity". Just so we are clear about the terminology, there is celiac disease and there is NCGS (Non Celiac Gluten Sensitivity). They are not the same but they have overlapping symptoms. Celiac disease causes damage to the small bowel lining but NCGS does not. NCGS is often referred to in short form as gluten sensitivity. However, people often use the terms celiac disease and gluten sensitivity interchangeably so it can be unclear which disease they are referring to. Genetic testing cannot be used to diagnose celiac disease but it can be used to establish the potential to develop active celiac disease. About 40% of the general population has one or both of  the genes that have been most strongly connected with the potential to develop active celiac disease but only about 1% of the population actually develops active celiac disease. This makes the genetic test useful for ruling out celiac disease but not for diagnosing it. A colonoscopy cannot be used to diagnose celiac disease because it doesn't permit the scope to go up into the small bowel where celiac disease does the damage. They use an endoscopy ("upper GI) for checking the small bowel lining for celiac damage.
    • barb simkin
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    • trents
      @barb simkin, are you sure the chocolate products are gluten-free and not "manufactured on equipment that also handles wheat products and tree nuts", i.e., cross-contamination? And what kind of alcoholic beverages are we talking about? Most beers are made from gluten-containing grains. Just checking.
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