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jodikris

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jodikris Apprentice

I am not sure if this is the place for me but I have been diagnosed with the skin condition associated with Celiac Disease... I am still waiting for the blood work to see if I have the full blown disorder. I am very confused by this and have some questions?

1. How is it possible for me to all of a sudden be Gluten intolerant I am 30 years old?

2. SHould I have my four month old baby check for this disease?

3. Where should I buy the Gluten free stuff from?

4. If my blood test from my dermatologist comes back that i do in fact have celiac disease do I need to see a gastro enterologist?

Any words of advice would be wonderful!

Jodi


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KaitiUSA Enthusiast

The skin condition is DH. When a person has this they do have an intolerance to gluten.

Celiac can be in your body your whole life but be triggered my things such as mono(like I had) and stressful events, surgeries, etc.

If you do in fact have Celiac it is possible you just haven't noticed it. Many celiacs go without symptoms so one may think they are perfectly healthy but have their intestines being torn apart.

If you in fact end up having Celiac your child should be tested.

Many companies if you call them will provide lists of their products that are gluten-free. Kraft is a company that will not hide anything. Unless their brands says wheat, rye, barley, or oats then their brand is safe. Other brands are like that as well. There are many things at the regular supermarket are gluten-free you just have to find the brands.

Also Amy's is a good brand to buy. They have prepackaged meals and some are gluten-free. They have a mac and cheese which is very good and lasagna which is ok. Amy's also has a pretty good gluten-free pizza. I get Amy's products at the Whole Foods or Common Market. I am not sure where you live but I'm in MD and those are the stores they have here.

If your blood turns back positive for Celiac he will most likely recommend you see a GI doctor and you can talk with him to see how you want to proceed.

Hope this info helps if you need any help with brands of food or anything else feel free to email me

:D good luck

MySuicidalTurtle Enthusiast

1. How is it possible for me to all of a sudden be Gluten intolerant I am 30 years old?

Sometimes people don't have obvious reactions and the they get them. Also, symptoms may go away, however, damage is still being done.

2. SHould I have my four month old baby check for this disease?

Yes, you should but ask your doctor at which age to test. Your close family relatives should aslo be tested.

3. Where should I buy the Gluten free stuff from?

Go to health food stores or the health sections of stores. To start stick with fresh meat, veggies, and things with strict plain ingredients. Then, once you learn what is glutenfree and what isn't you can move into other things like processed foods.

4. If my blood test from my dermatologist comes back that i do in fact have celiac disease do I need to see a gastro enterologist?

I am not sure about that one. You should ask your doctor. I never have seen a gastro, just my normal doctor.

As for brands: my fav breads and bagles come form Kinnikinnick (Open Original Shared Link) and you can order on-line or ask your local heath food store to carry them. Most rice pasta tastes good. For Honey Mustard Salad dressing I like Simply Delicious Brand.

Good Luck!

tarnalberry Community Regular

1. The condition is genetic, but it must be triggered to be active. You may have simply not have activated it yet.

2. Yes. DH is one manifestation of gluten-intolerance, and if you don't have intestinal damage now, you'll likely develop it in the future if you don't go gluten-free. Your child shares your genes, and may have inherited a gene for gluten intolerance. Even if he/she tests negative, the test should be repeated every few years to find out if she develops it later.

3. Depends on what you're looking for. I don't buy special made stuff very often, so I get all my regular foods (that are regularly gluten-free) like rice, beans, vegetables, fruit, and meat from a regular grocery store. (I do tend to cook from scratch, though.) I get some special stuff from the grocery stores that carry them, because I've been too lazy to order from online places.

4. Eh... Ideally, you'd have some followup with a GI who is knowledgeable about celiac disease.

jodikris Apprentice

Thank you all for your support. I have to admit I am a little scared by some of the things I have been reading on the internet. I so hope I do not have Celiac. I am not even sure if you can have one and not the other. I feel so uneducated about this disease. It took them almost 2 years to diagnose me.

I know that in 2001 my intestines were fine as I had a gastric bypass and my intestines were SCRUTINIZED at that point...so maybe the damage has not begun yet. I am hoping I have caught this in time to stop anything major from happening to me or to my daughter. I have removed all gluten contained baby foods from my house and plan to NEVER give them to her regardless. From what I am reading Gluten is just not good for you. Thanks again for your support..

Jodi :)

jodikris Apprentice

One last Question:

I went to an Allergist yesterday and was told this is not an allergy it is an intolerance. So can I have foods that were made in a plant that processes wheat but DO NOT have wheat in them!

I am so confused...can anyone recommend a book on this for me to read!

Jodi

Carriefaith Enthusiast
So can I have foods that were made in a plant that processes wheat but DO NOT have wheat in them!

To be sure, call the company.

It is possible the company uses different lines for wheat and non wheat products or maybe the wheat products are processed in a different room from the non-wheat products.


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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.
    • Scott Adams
      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.
    • MogwaiStripe
      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. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
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