New Celiac

[SmallTownCeliac]

Hi everyone.  I’m new here and I’m a newly diagnosed Celiac.  I was just diagnosed with Celiac Disease mid July. 
It’s been a learning process for me and my family.   I’m mostly coming here to see if I could get some advice.  I know it can take a while for my gut to heal after all the damage that was done from the Gluten.  It started getting sick in February and finally the GI Dr I went to figured out with a Blood Panel and a couple test that I was 100% Celiac and Gluten intolerant.  
I’m still have issues with diarrhea  nearly everyday.    It’s definitely not as bad as it was before I was diagnosed.  I am on a 100% gluten free diet.  I’ve started cutting out dairy now too because I think I’m also lactose intolerant.  
I’m not sure if I should be taking Imodium….  Is it or isn’t it Gluten Free?   I’m not even sure if it helps…. I’ve taken it but I’m getting mixed answers when I try and figure out if it contains gluten.  This is a big learning process.  I know one day I’ll be an expert but today is not that day.  
I am just really ready for the diarrhea to stop.  
every day it happens.   I don’t know what I’m doing wrong.  The foods that I know I’ve eaten that are gluten free that bother me I stop eating …. Popcorn, Peanut butter, dairy….  
is there vitamins I can take, should take to help!?  
many advice would be so greatly appreciated…. 
 

feeling discouraged and a little lost…. 
A SmallTownCeliac b

[trents]

Welcome to the forum, SmallTownCeliac!

Some celiacs react to the protein in oats in the same way that they do gluten. So, you might try eliminating oats. Also, it is very common for celiacs to develop other food intolerances. Soy, dairy, eggs, corn, oats are common ones but it can be almost anything. You might do well to keep a food diary. Do you have gut pain or just diarrhea?

[Scott Adams]

Welcome! I just want to point out that you may still be getting gluten in your diet, for example if you eat at restaurants, or in other things like medications (Imodium is gluten-free I believe), so be sure to re-check your diet for hidden sources of gluten, including cross-contamination (do you use a shared toaster?).

That said, like @trents mentioned, you could have additional food intolerance issues (dairy/casein is a common one among celiacs), and this article covers some more things to consider, if what we've already mentioned doesn't help:

 

[SmallTownCeliac]

7 hours ago, trents said:

Welcome to the forum, SmallTownCeliac!

Some celiacs react to the protein in oats in the same way that they do gluten. So, you might try eliminating oats. Also, it is very common for celiacs to develop other food intolerances. Soy, dairy, eggs, corn, oats are common ones but it can be almost anything. You might do well to keep a food diary. Do you have gut pain or just diarrhea?

 

7 hours ago, trents said:

Welcome to the forum, SmallTownCeliac!

Some celiacs react to the protein in oats in the same way that they do gluten. So, you might try eliminating oats. Also, it is very common for celiacs to develop other food intolerances. Soy, dairy, eggs, corn, oats are common ones but it can be almost anything. You might do well to keep a food diary. Do you have gut pain or just diarrhea?

Thank you!  I have been eating oatmeal more often…. Of course it says it’s gluten free but it could be reacting to me like Corn and Peanut butter does… I’ve found I can’t eat Yellow Corn, or things like Yellow Corn crackers or popcorn and peanut butter or things made with it.  
I’ve been eating a lot of eggs and since I’ve been diagnosed I really haven’t thought about a Food Sensitivity test that I took and it showed up that I was pretty highly sensitive to eggs both the white and the yolk.  
I do have gut pain-  but I’ve always figured it was gas pains.   And I’m still having diarrhea.  Not all day long like I was. But more often than id like.   

[SmallTownCeliac]

4 hours ago, Scott Adams said:

Welcome! I just want to point out that you may still be getting gluten in your diet, for example if you eat at restaurants, or in other things like medications (Imodium is gluten-free I believe), so be sure to re-check your diet for hidden sources of gluten, including cross-contamination (do you use a shared toaster?).

That said, like @trents mentioned, you could have additional food intolerance issues (dairy/casein is a common one among celiacs), and this article covers some more things to consider, if what we've already mentioned doesn't help:

 

Yes. I share a toaster 🤦🏼‍♀️ 
I’ve eaten in restaurants and some are very accommodating. And take it serious and I don’t have problems. Others I know when I get sick it’s not a place I go back….  
I’m cutting the dairy out.  I’m hoping that will help.  I’ll have to start checking other things too.   Thank you so much.  I’ll check out this article.  
 

[Wheatwacked]

9 hours ago, SmallTownCeliac said:

is there vitamins I can take, should take to help!?  

Atrophy of the nooks and crannies in the small intestines causes malabsorption syndrome. Common deficiencies  are  fiber, iron, calcium, magnesium, zinc, folate, niacin, riboflavin, vitamin B12, and vitamin D. Potassium is a "nutrient of concern" in most countries because we don't eat enough of it. Diahrea, a common comorbidity with Celiac Disease causes loss of potassium through the large intestine. Geritol Multivitamins is the only one I am aware of that has more than 100% RDA of most of them in one tablet. You might try a bottle and see how you respond.  Potassium you need to get from food. Recommended intake in the US is currently 4700 milligrams a day. Watermelon is a great source. I eat about a pound a day.

I recently posted a webpage listing what I eat and the vitamins and minerals in those foods with daily totals. It might give you some ideas.   http://nutrientlog.doodlesnotes.net/

[GodsGal]

Hi SmallTownCeliac! 

Right now it probably feels like you are fighting an uphill battle. It is hard, and I get discouraged, too. I know that small towns/rural areas may not have as many resources. And, celiac disease may not be as well known. Has that been your experience? Do you know other people who have celiac disease in your area? Are there any support groups close to you? This forum, people to talk to, and counseling has really helped me. You've got a lot of people here in your corner! You can do this, my friend.

You were asking about medications. One resource that I have found really helpful has been dailymed.nlm.nih.gov. I believe that Scott Adams mentioned it in a reply awhile back. It has really helped me to be safe. You can type in the NDC code, and it will list all of the ingredients. It doesn't rule out cross contamination. But it is helpful. 

Also, have you checked non food items for gluten? Especially anything that might come into contact with your face or hands? After going gluten free, I realized that my skin issues were caused by gluten. It really helped me to switch to gluten free lotions, soaps, shampoo, conditioner, detergents, etc. It's even found in cosmetics, toothpaste, and pet food. 

Have you switched out your toothbrush since going gluten free? Do you have your own tube of toothpaste? I would recommend that you get your own dedicated gluten free kitchen utensils, dishes, dishrags, and toaster. They should be stored separately.

I know that it is rough. It will get easier. You will have ups and downs. And you will probably feel overwhelmed at times. (At least I have/do.) It's totally normal. But you can do this. Keep us posted!

[Kate333]

Hi, small town.   Welcome to the "club" no one wants to belong to.  I know it's hard not to be discouraged and lost.  Be assured that we ALL feel that way, esp. right after initial diagnosis.

Some advice from another [relative] fellow newbie [diagnosed in late 2019, gluten-free diet since March 2020:  I suggest that you avoid ALL restaurants (even carryout) AND buy, cook, and eat ONLY fresh, meats, fruits, veggies and avoid unprocessed, unpackaged foods for the next couple of months to see if you notice any improvement in your symptoms. 

Yes, I know that's a lot too ask, a stressful BIG change to make in your life, routine, etc.  But it's so important because restaurants (even those advertising "gluten-free" ingredients or menu items) and processed, packaged foods (yes, even those labeled "gluten-free") can be big sources of gluten cross-contamination or hidden gluten (or other ingredients that can irritate your gut, like artificial colors, flavors, high sugar content).  The reason this can frequently happen is that in the US, regulations are rarely enforced and inspections to ensure truly gluten-free restaurant facilities or processed food ingredients don't really happen.  Essentially, corporations are held to the self-policing "honor system." Personally would not rely on that kind of assurance, esp. right after diagnosis.

Good luck on your healing journey, and I hope you feel much better soon!    

[SmallTownCeliac]

On 9/10/2021 at 7:29 PM, Wheatwacked said:

Atrophy of the nooks and crannies in the small intestines causes malabsorption syndrome. Common deficiencies  are  fiber, iron, calcium, magnesium, zinc, folate, niacin, riboflavin, vitamin B12, and vitamin D. Potassium is a "nutrient of concern" in most countries because we don't eat enough of it. Diahrea, a common comorbidity with Celiac Disease causes loss of potassium through the large intestine. Geritol Multivitamins is the only one I am aware of that has more than 100% RDA of most of them in one tablet. You might try a bottle and see how you respond.  Potassium you need to get from food. Recommended intake in the US is currently 4700 milligrams a day. Watermelon is a great source. I eat about a pound a day.

I recently posted a webpage listing what I eat and the vitamins and minerals in those foods with daily totals. It might give you some ideas.   http://nutrientlog.doodlesnotes.net/

Thank you for your response. I will look into these. And check out this link.  
I know I haven’t been getting my nutrients or absorbing much…. I’m 5’7 and I lost down to 99 lbs when we finally figured out that I had celiac.  
I’ve gained a little back thankfully. But I still don’t feel 100% Myself. If that makes sense. 
I’m sorry I’m just now replying. I’ve been traveling this weekend and that has been hard. Talk about feeling like a burden….  I just want to be an expert already… but it’s taking time. 

[SmallTownCeliac]

On 9/10/2021 at 9:03 PM, GodsGal said:

Hi SmallTownCeliac! 

Right now it probably feels like you are fighting an uphill battle. It is hard, and I get discouraged, too. I know that small towns/rural areas may not have as many resources. And, celiac disease may not be as well known. Has that been your experience? Do you know other people who have celiac disease in your area? Are there any support groups close to you? This forum, people to talk to, and counseling has really helped me. You've got a lot of people here in your corner! You can do this, my friend.

You were asking about medications. One resource that I have found really helpful has been dailymed.nlm.nih.gov. I believe that Scott Adams mentioned it in a reply awhile back. It has really helped me to be safe. You can type in the NDC code, and it will list all of the ingredients. It doesn't rule out cross contamination. But it is helpful. 

Also, have you checked non food items for gluten? Especially anything that might come into contact with your face or hands? After going gluten free, I realized that my skin issues were caused by gluten. It really helped me to switch to gluten free lotions, soaps, shampoo, conditioner, detergents, etc. It's even found in cosmetics, toothpaste, and pet food. 

Have you switched out your toothbrush since going gluten free? Do you have your own tube of toothpaste? I would recommend that you get your own dedicated gluten free kitchen utensils, dishes, dishrags, and toaster. They should be stored separately.

I know that it is rough. It will get easier. You will have ups and downs. And you will probably feel overwhelmed at times. (At least I have/do.) It's totally normal. But you can do this. Keep us posted!

Hi GodsGal!  
yes!!!  You nailed it!  I do feel I’m fighting up hill battles.  I feel like nobody understands. My husband especially.   He seems to care but I don’t know if he understands it all.  
No! It’s not well know in my area I don’t think.  
move had 1 restaurant where the chef took extra good care of me and everything was great.  
 

I haven’t even thought of cooking utensils and such.   I will have to do that ASAP.  
I do use gluten free toothpaste no I know my lipstick is.  I’m not sure about anything else. 
Im going  to do some research. 
thank you so much for this advice. 

[Wheatwacked]

3 hours ago, SmallTownCeliac said:

I feel like nobody understands. My husband especially.   He seems to care but I don’t know if he understands it all.  

I am sorry for that. It would be good if your husband joined you on your gluten free journey. He might find some benefit for himself.