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Newbie May Have Ciliac Disease


CaveBear

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CaveBear Newbie

Hello everyone.

I'm really very new to this. I went into the hospital tuesday with severe iron deficiency

anemia (hemogloban was 6.4). Got a total of 4 units of packed red blood cells to get my

counts higher, but also while I was there they gave me both an upper and lower endoscopy.

They found no sources of bleeding, which is what they were looking for, but found signs

of Celiac in my small intestine and took a biopsy. I won't know the results of the biopsy

probably for around a week. In the mean time they put me on a gluten free diet.

I went out and found a couple heath food stores that stocked gluten free products,

so I got some rice bread, pizza and pasta.

Anyways, like I said I am really new to this. If anyone can give me some helpful suggestions

on getting started and maybe what to watch for I would really appreciate it.

Thanks,

Randy


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Lisa Mentor

Welcome Randy:

This is a great place to learn about Celiac.

First, don't rush off any by gluten free foods yet. (I still have some I bought when I was first dx'd almost two years ago). Try to stick to naturally gluten free foods such as, meats, seafood, rice, potatos, fresh veggies, eggs and fruit.

The diet is not difficult and with a little adjustment, you can eat as well as before and healthier.

Some people are sensitive to dairy until they heal and then gradually re-introduce into their diet.

There is a ton of information on this site. Read and Ask.

HawkFire Explorer

Watch for gluten in your shampoo, conditioner, chapstick, and other personal care products. Watch for gluten in things such as your BBQ briquettes! Yes! They typically contain wheat. Can you believe it? Watch for the one brand (I forget) of Hotdogs that contain wheat. Watch for torn or fragmented teflon pans- the gluten can remain within the tears. Watch for plastic spatulas. Do not use the same utensil for preparing gluten free/gluten full food items. That small amount of cross-contamination will negate the best of your efforts to remain gluten free.

You will find that many gluten free products are not very good. Some companies capitalize on a desparate consumer group. I recommend kinnkinnick.com. I use them. They are reputable and their food products are NOT a waste of your hard-earned money!

I know some people say stick with naturally gluten free products, but I have three children and we did need to find replacements when we went gluten free. We have bread, we have crackers, we have spaghetti - Tinkyada brand is the only one I buy- we make garlic bread on Kinnikinnick english muffins to go with our italian meals. We are not deprived in any way. Texture and flavor are important in food.

  • 4 weeks later...
CaveBear Newbie

Well, I got my tests back, both blood tests and the endoscopy biopsy and it was determined that

I definitely do not have Celiac's disease. I want to thank those that responded to my

post, and want to wish you all the best of luck living gluten free. After living for around a

month gluten free, I have a deep respect for all of you that have to deal with it

perhaps for the rest of your lives. I truly hope they will someday find a cure,

or at least a drug that will allow you to be able to eat without having to worry

about what is in the ingredients of everything you eat.

All my best,

Randy

Lisa Mentor
Well, I got my tests back, both blood tests and the endoscopy biopsy and it was determined that

I definitely do not have Celiac's disease. I want to thank those that responded to my

post, and want to wish you all the best of luck living gluten free. After living for around a

month gluten free, I have a deep respect for all of you that have to deal with it

perhaps for the rest of your lives. I truly hope they will someday find a cure,

or at least a drug that will allow you to be able to eat without having to worry

about what is in the ingredients of everything you eat.

All my best,

Randy

Randy, you know that this a place for support, where ever life finds you. Whether Celiac or not, it's always a good place to come.

Nantzie Collaborator

Also, keep the gluten-free diet in the back of your mind as something to try. There are so many people here (including me) who had negative test results, but had life-changing results just by trying the diet.

I hope you feel better soon.

:D

Nancy

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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/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
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