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New Celiac In Need Of Advice!

GFLindsey

By GFLindsey
in Coping with Celiac Disease

Recommended Posts

GFLindsey Explorer
GFLindsey
Posted

Hello fellow gluten-free friends!

I was officially diagnosed with Celiac disease on 2.5.10 so I am a newbie to this. I am still in need of an overhaul in my pantry and refridgerator to get rid of all my gluten-laden foods and was wondering if I also need to replace dishes, pots, pans, toaster, etc.?

Also, since I am so new, does anyone have any advice for starting out? I am sure there are things that I cannot even imagine which had gluten in them. Any advice/support would be greatly appreciated. I am so happy to have an online community for help during this new adventure.

Wishing good health to all!

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psawyer Proficient
psawyer
Posted

Hello, Lindsey, and welcome to the board.

Try these links for useful information:

Unsafe ingredients.

Safe ingredients.

Open Original Shared Link If you don't see "wheat, rye, barley, barley malt, oats" on the labels, its not there, or hidden in "flavors, starches, etc."

Always read the label.

luvthelake21 Rookie
luvthelake21
Posted

Also wanted to say welcome to the forum and you do need to get rid off all old cookware(teflone), get a new toaster, sifter, strainer and watch out for hair products espically at salons.

Squirrelflight Rookie
Squirrelflight
Posted

Also wanted to say welcome to the forum and you do need to get rid off all old cookware(teflone), get a new toaster, sifter, strainer and watch out for hair products espically at salons.

Just to specify.. as far as I know if it's metal or glass you can scrub it well but if it's Teflon coated, wood or plastic you should replace it. Welcome!

AmyT Newbie
AmyT
Posted

I am new too, and there are so many helpful people here! Here is one of the good tips that I learned here. Don't go overboard on all the gluten free processed products out there. It can be very overwhelming. Start out with a few but stick to whole foods: veggies, fruits, chicken, fish, beans, legumes etc. They are much easier to digest and you know you won't get any gluten that way!!

Good luck you will feel better soon!

GFLindsey Explorer
GFLindsey
Posted
  • Author

Thank you all for taking the time to help.. Much appreciated!

gena Newbie
gena
Posted

Hello fellow gluten-free friends!

I was officially diagnosed with Celiac disease on 2.5.10 so I am a newbie to this. I am still in need of an overhaul in my pantry and refridgerator to get rid of all my gluten-laden foods and was wondering if I also need to replace dishes, pots, pans, toaster, etc.?

Also, since I am so new, does anyone have any advice for starting out? I am sure there are things that I cannot even imagine which had gluten in them. Any advice/support would be greatly appreciated. I am so happy to have an online community for help during this new adventure.

Wishing good health to all!

I would suggest not eating out to start with. Yes there are places that have gluten free menu's, however, untill you are sure about the preparation i would avoid them in general. I work at McDonalds and while yes they do make anything you want without a bun they do not change their gloves or the tongs that have touched bread. I also found that with my busy schedule its easier for me to buy larger amounts of mixes and when i have the time cook 4 or 5 meals worth of food and freeze it for later. You cant go wrong with fruits, meats and veggies but there are more and more health food stores showing up that have great gluten free sections. I found one near me that has donuts, chicken nuggets and lots of other goodies so i would get online and see what stores near you have.

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Bobbijo6681 Apprentice
Bobbijo6681
Posted

Hello fellow gluten-free friends!

I was officially diagnosed with Celiac disease on 2.5.10 so I am a newbie to this. I am still in need of an overhaul in my pantry and refridgerator to get rid of all my gluten-laden foods and was wondering if I also need to replace dishes, pots, pans, toaster, etc.?

Also, since I am so new, does anyone have any advice for starting out? I am sure there are things that I cannot even imagine which had gluten in them. Any advice/support would be greatly appreciated. I am so happy to have an online community for help during this new adventure.

Wishing good health to all!

Lindsey,

Glad to see you found this great website, and that you are on the path to being healthy again. I just went to see my GI for a follow up yesterday and he cautioned that you must even watch things like Ketchup and salad dressings for the possibility of Gluten. I know that probably isn't what you wanted to hear, but I would recommend READING Every Label for absolutely everything. As a "newbie" I understand where you are at and feel your pain, but I can already tell a difference in how I am feeling so in the end I think it will be worth all of this.

Good Luck!!!

StacyA Enthusiast
StacyA
Posted

Hi Peter. That list for companies that disclose gluten is 3 years old. Do you know of a good, updated one?

- Stacy

psawyer Proficient
psawyer
Posted

The list may now be incomplete, but none of those companies have discontinued their label policy.

In the time I have been involved, only one company has changed from "trusted" labels to a crap shoot, and that is Hershey. :angry:

Archived

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    • Jacki Espo
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      Welcome to the forum, Linda! Many on this forum can sympathize with you. It can be extremely difficult to get reliable information about gluten when it comes to meds, supplements and oral hygiene products. This is especially true since so much of this stuff is generic and comes from over seas. I will deflect with regard to your question about meds and oral products but take you in another direction. Have you tried a low iodine diet. Iodine is known to exacerbate dermatitis herpetiformis and some find that a low iodine diet helps reduce the number of outbreaks. By the way, have you had your celiac antibodies retested recently? If they are elevated that might be a clue that you are getting gluten in your oral hygiene products or meds.
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      Hi. I’m 70 years old, and a 22 year survivor of head and neck cancer treated with chemo-radiation, which resulted in non-existent submandibular salivary glands and extreme dry mouth and altered oral mucosa. I have been using dry mouth toothpaste, Rx oral dentrifices and moisturizers for years.  I’ve recently been diagnosed with severe celiac dermatitis herpetiformis. I was being treated with oral Dapsone, but it was not effective and I developed some serious side effects. So, the medication was stopped and I was started on Doxycycline (another antibiotic) for inflammation. I’ve been using Rx Betamethasone steroid ointment with little to no effect. I have tried every oral and topical antihistamine treatment available OTC. None have touched this horrible relentless itching. That is my history.  Now to my question. Does anybody know about gluten free toothpastes and mouth moisturizers? I ask because a very common dry mouth brand stated to me that they were indeed gluten free. But as I am not getting any better with my dermatitis herpetiformis, I was wondering if I was getting glutenized some way other than diet as  I have been following a strict clean gluten free diet, but I am not seeing any improvement at all. So, I started looking up the toothpastes and moisturizer ingredients individually and nine (9) of the eleven (11) or so listed showed up as   containing gluten or that may have gluten! Am I getting glutenized orally by these products?  As an aside, I checked on my favorite lavender scented baby lotion which is supposed to be gluten free, but many of those ingredients when investigated separately, show they  do contain or may contain gluten as well. I stopped using the lotion. But I cannot forgo my dental care. I was unable to get any information from the manufacturer of my current brand of chewable multivitamins either. They told me to check with my doctor. If THEY don’t know what’s in their product, how do they think a PCP will?  In light of all this, I am confused and angry that I might keep getting contaminated with gluten through products I am using that are supposedly gluten safe. *I should also state that I have a nickel allergy since I was about 12-13 years old. And I developed a contact allergy to latex (gloves) when I was a student nurse at 19 years old.  I know and I’m sorry that this is so lengthy. I’m trying to do everything I can to combat this condition, and I’m feeling very confused, anxious and angry about not getting adequate information as I try to educate and advocate for myself. I’m hoping someone here is more knowledgeable than me of how to navigate through all of this. Can anyone offer any advice?  Thank you for your time.  Respectfully,  Linda
    • trents
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      Welcome to the forum, @Cathijean90! I went 13 years from the first laboratory evidence of celiac disease onset before I was diagnosed. But there were symptoms of celiac disease many years before that like a lot of gas. The first laboratory evidence was a rejected Red Cross blood donation because of elevated liver enzymes. They assume you have hepatitis if your liver enzymes are elevated. But I was checked for all varieties of hepatitis and that wasn't it. Liver enzymes continued to slowly creep up for another 13 years and my PCP tested me for a lot of stuff and it was all negative. He ran out of ideas. By that time, iron stores were dropping as was albumin and total protein. Finally, I took it upon myself to schedule an appointment with a GI doc and the first thing he did was test me for celiac disease. I was positive of course. After three months of gluten free eating the liver enzymes were back in normal range. That was back in about 1992. Your story and mine are more typical than not. I think the average time to diagnosis from the onset of symptoms and initial investigation into causes for symptom is about 10 years. Things are improving as there is more general awareness in the medical community about celiac disease than there used to be years ago. The risk of small bowel lymphoma in the celiac population is 4x that of the general population. That's the bad news is.  The good news is, it's still pretty rare as a whole. Yes, absolutely! You can expect substantial healing even after all these years if you begin to observe a strict gluten free diet. Take heart! But I have one question. What exactly did the paperwork from 15 years ago say about your having celiac disease? Was it a test result? Was it an official diagnosis? Can you share the specifics please? If you have any celiac blood antibody test results could you post them, along with the reference ranges for each test? Did you have an endoscopy/biopsy to confirm the blood test results?
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