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Newbie...not Yet Diagnosed


labsr4me2

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labsr4me2 Rookie

Hello everyone,

Here is my story. I would appreciate any input.

As far as I can remember, it started about two or three years ago. I decided to start eating healthier and working out more. Once I did that and lost about 20 pounds, I noticed that I would get sick to my stomach when ever I would eat greasy foods and sweets. (I thought nothing of it except my body was no longer used to the junk).

Then back in December, every time I ate carbs (so I thought) I would get sick to my stomach, exctremely light headed, tired and weak. I started paying closer attention to my foods and symptoms. It ended up being more when I would eat diary and breads.

I got scared and went to urgent care. They did a blood panel and checked for diabetes and thyroid issues. Those tests showed nothing. I waited it out for a few weeks and then went to the doctor. They ran the same tests and came back with the same results.

I decided to give up (due to the doctors not acting like it was that big of a deal).

Then towards the end of March or beginning of April. Some one had suggested that I go off of Gluten. I did that and my symptoms continued. I finally removed diary also and after a while I started to feel better.

People kept telling me I had to go back to the doctor and get the official testing done for Celiac disease. So I did some of my own research and called the doctor to have a blood test done.

The doctors office was not really sure how long I should go back on Gluten for before the test so they recommended two weeks. I did not make it through a weekend and again removed gluten from my diet.

So I continued to research.....I finally found some things in my research that explained some symptoms that I have had for (what feels like forever) probably my whole life. I get (what I thought to be) eczema. Recently I have been getting a rash on my scalp that tends to keep my up at night and causes sores. I thought I just had a really dry scalp.

The readings have suggested I get a skin test done for DH. I am curious if:

1. is it necessary (my husband says "NO, just stay off of gluten and you will be fine.")

2. How long do I need to eat gluten before the test?

3. How do I find a doctor that knows about this and that can help me without running a bunch of unneeded tests?

4. Should I have my son tested as well. (he has no issues except he used to have the itchy scalp thing as well)

The other question I have is that in my readings it talks all about how symptoms are not instant and it talks nothing about the "funky" head feeling that I have been having. I can take about 1/4 tsp of something and instantly feel like I am on some sort of cold medicine or drunk. My head feels heavy. I get extremely tired and dazed. I just feel like I am floating....??? Is this even a symptom???

Please help???? :-(


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MySuicidalTurtle Enthusiast

It sounds like you have a lot of Celiac symptoms! The whole getting officially diagnosed thing is really up to you. If you do not need that confirmation and the diet is working great, then why go on gluten again? Say you do need more proof, then you have to eat gluten and I think for about 2 weeks. Some doctors can see the improvements from the diet, though. You could get your son tested since he is still eating gluten. Celiac Disease is genetic and the sooner you know, the better. However, you also might just have a gluten and casein intolerance, so, just do what feels best for you.

Good luck!

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    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
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      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
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      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
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    • trents
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