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Newly Diagnosed | Have Questions


BillH

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BillH Newbie

Hello all. I was diagnosed two days ago at 26. I’ve had my battles with H pylori twice in the past but this time around having flare ups I was diagnosed with celiacs. I have just a few questions regarding how to transition to being gluten free. This is completely new to me and I wasn’t given much information by the doc. 

Do I need to get all new cookware? I understand that I ditch the toaster, cutting boards, but are pots, pans, silverware okay just to wash?

Should I get with a nutritionist?

What are the “essential” vitamins I should start taking while starting gluten free diet?

Thank you in advance! 


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trents Grand Master
(edited)

Welcome to the forum, BillH!

Are you sharing the kitchen with others who are not trying to eat gluten free?

I see no need to ditch existing pots and pans and utensils, as long as you scrub them thoroughly after they were last used for cooking gluten containing foods.

Concerning vitamins, I would advise an adult Centrum or equivalent plus a high potency B complex. I would also add in 2000IU of D3. Costco is a great place to purchase glute free vitamins and supplements via the Nature Made brand they carry.

Concerning involving a nutritionist, there is possible benefit to that in learning how and where gluten is found/hidden in processed food products. However you do it, the big challenge for you now is to educate yourself in that regard. Cutting out bread and noodles and other macro sources of gluten is the easy part. Avoiding trace amounts through cross contamination when purchasing processed foods or eating out is much more challenging. Another part of that is realizing that wheat is used in many processed food products you would never expect to find it in such as soy sauces and even some chocolate syrups. That's just a couple of examples. Never take it for granted that any processed food item will not contain gluten. Always read labels.

Edited by trents
GodsGal Community Regular

Hi Bill,

I would probably recommend replacing wooden utensils. Also, you will need to check for gluten in things like your toothpaste, lotions, soaps, and medications.  And, I would recommend changing your toothbrush.

It's a big change that you are going through. I think that a nutritionist is a good idea. I found it helpful.

Also, do you know anyone who has a gluten sensitivity or celiac in your area? Sometimes it helps to have someone to talk to in person. I found that counseling really helps me as well.

You are probably going to be getting a lot of information. For me it kind of felt like trying to get a drink of water from a high pressure fire hose. A bit overwhelming! I know that you can do it. When it gets tough, don't forget to breathe.

Keep us posted!

RMJ Mentor

If you feel you would be helped by a dietician or nutritionist, be sure to find one experienced in celiac disease.

trents Grand Master

Absolutely! Not all are.

GF-Cate Enthusiast

If your pots and pans are stainless, they should be fine after a thorough scrub , but other materials such as non-stick, cast iron and stoneware can hold gluten residue.

Yvonne (Vonnie) Mostat, RN Collaborator
On 5/21/2021 at 7:27 PM, BillH said:

Hello all. I was diagnosed two days ago at 26. I’ve had my battles with H pylori twice in the past but this time around having flare ups I was diagnosed with celiacs. I have just a few questions regarding how to transition to being gluten free. This is completely new to me and I wasn’t given much information by the doc. 

Do I need to get all new cookware? I understand that I ditch the toaster, cutting boards, but are pots, pans, silverware okay just to wash?

Should I get with a nutritionist?

What are the “essential” vitamins I should start taking while starting gluten free diet?

Thank you in advance! 

Since I retired I was "twitching" for something to do after years of nursing, so I helped the Nutrition Department at our local Hospital.  I was surprised at how little information she had on file for Celiac Disease, and when I arrived home I faxed many many pages to her regarding celiac disease.  I want to be kind, but have you name it as if you were dealing with celiac disease for years.  We don't usually say "celiacs", but  "diagnosed with celiac disease" is the professional way to say it. I often wondered whether I should capitalize both celiac and disease, but so often I notice that prominent authors will do it either way, but if you are going to say celiac disease, then do not capitalize the Celiac and leave the disease not capitalized.

The Celiac Journal of Gluten Sensitivity has so many ideas and more information on celiac disease than you can possibly put into a file.  

Did you know that Cosmetics can contain gluten.  It is gluten that you are wanting to eliminate from your diet, so an idea is to type out the foods that contain gluten and laminate the file card.  Both my husband and I have a card when we are shopping and it helps a lot. But you still have to be aware and read ingredients.  We bought something last week at the M & M Food Stores here in Canada.  I bought some bars that said they were gluten free, but you see for me that is not good enough.  After munching a big bite of the bar I found out it contained rolled oats.  Now, they SAY rolled oats is gluten free, but as my specialist said, not all Celiac people can tolerate rolled oats, and I am one that cannot tolerate rolled oats.  I had a major outbreak for not picking up on that., Since my husband had bought the box of "bars" he did not realize how bad rolled oats were for me. Not all celiac people can tolerate rolled oats and I happen to be one that cannot.  Yes, they do grow oats in a field separate from other grains, they have to be very aware what is growing in the next field to them, or even just down the road. We all know about the wind that can carry small grains through the air, and also birds that, excuse me, "poop" as they fly by the rolled oat field, and up comes some other grains, for instance wheat.  That is where these new machines come in so handy, and you can read about them in the Celiac Journal.  It was one of the first  magazines that I purchased over 20 years ago and I find it a wealth of information because  you can pull up older publications that can answer your questions.  And the Editor, Scott, though not a physician, and will not diagnose as a physician, and I will not diagnose as a nurse, he has been publishing the magazine for just as long as I have suffered from Celiac Disease and Dermatitis Herpetiformis, which we often call "Celiac Disease of the Skin".  I do hope and pray you do not get DH because it is terrible.  The sores itch, hurt, and drive you crazy. That too is on the magazine list.   Yvonne 9Vonnie) Mostat, R.N., Freelance Journalist

I remember being a new Celiac, and it is like going through a forest, so I hope you get some information SOON, and the Celiac Journal has so much information in it.IN fact I have an entire cupboard consisting of baking ideas, treating DH outbreaks, and visiting restaurants without vomiting on the way home, (excuse me, but that is what I UASED to do prior to being diagnosed with Celiac Disease).  No more Chinese Food for me from a restaurant.  

I wish you Good Look and Safety following the diet.  It is not as bad as it seems and, you know, if you read about rheumatoid arthritis, one of the first things it lists as a definite "NO NO" is Gluten, so you are doing your body a favor by keeping a file for yourself.  There are some excellent books on Celiac Disease and Dermatitis Herpetiformis that you might find very useful too. And, remember, stress is one of the worst things you can do to your poor little body. I received the gift of Dermatityis Herpetiformis


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      Welcome to the forum, @Tyoung! It is possible that you are experiencing some kind of gluten withdrawal but I would thing that would have started to subside by now. There are a couple of possibilities that come to mind. One is the polysaccharide ingredients that are typically found in prepackaged "gluten-free" wheat flour facsimile foods. If you read the ingredient lists of such foods you will usually find things like guar gum and xanthan gum. Their function is to give the product a texture similar to wheat flour but they are hard to digest and give many celiacs digestive issues. I mention this not knowing if you are relying on prepackaged gluten free food items to any extent or are just choosing carefully from mainstream naturally gluten free food items. Another is that your body is just going through adjustment to a major dietary change. Wheat is a significant component to the typical western diet that supplies certain nutrients and some fiber that has now been withdrawn suddenly. Are you experiencing any constipation? Also be aware that foods made from gluten-free flour are typically devoid of nutritional value. Wheat flour is mandated by government regulations to be fortified with vitamins but gluten-free flours are not. It can be smart to compensate for this with vitamin and mineral supplements. Still another possibility is that in addition to being gluten intolerant, your also have other food intolerances. One small study found that 50% of celiacs reacted to dairy like they do gluten. That number may be on the high side in reality and more research needs to be done. However, it is true that dairy intolerance is very common in the celiac community. Another common "cross reactive" food is oats. There are certain foods whose proteins closely resemble gluten and cause the same reaction. About 10% of celiacs react to the protein "avenin" in oats like the do the protein gluten. You might try eliminating dairy and oats for a few weeks and see if your symptoms improve.
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