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Sooooooooo Over This Already.

fiveoaks

By fiveoaks
in Coping with Celiac Disease

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fiveoaks Newbie
fiveoaks
Posted

My uncle died of stomach cancer and my father is newly diagnosed with esophageal cancer, so I promised I would go do an EGD because of, what we thought, was GERD symptoms, only to find out I have Celiac Sprue AAAAAAANNNND a severe lactose allergy.  After a weekend of internet searches and reading everything I can get my hands on, I am in celiac disease overload.  I mean COME ON, Chapstick is not OK??????????????!!!!!!!!!!!!  And I need to check my shampoo?  Seriously, how important is topical exposure?   And why the Hell is all the gluten-free food so expensive and full of fat????  My husband was diagnosed with diabetes last year and throwing this on top of our already altered life style is INSANE!  We had already made HUGE changes to our diets to accommodate his condition and here we are now trying to eliminate gluten and worrying about all the cross exposures and day to day products that can cause a topical exposure.  Both my husband and I are at our target weight (he's 6 ft 3 and 220 and I'm 5 ft 6 and 130), so I thought we were doing great with our nutrition and diet, now we have to change it ALL up AGAIN????  I'm so lost and overwhelmed................ 

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kareng Grand Master
kareng
Posted

Take a deep breath.  Maybe one more...

 

There is a lot of nonsense info on the internet, so be careful who is posting it.  Eating gluten free does  not mean you have to eat gluten-free "replacement" foods.  You can still eat a nice healthy diet.  Fruit, veggies, meat, rice, quinoa, beans, etc are gluten-free.  Just read labels if you are getting something more than one ingredient.

 

Read the newbie thread

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

And a good site for reliable info

 

 

Open Original Shared Link

 

Open Original Shared Link

 

What ingredients should I avoid in cosmetic products?

Gluten is only toxic to celiac patients and patients with dermatitis herpetiformis (DH) if ingested. Because gluten cannot be absorbed through the skin, the use of cosmetic and shampoos containing gluten has not been shown to be detrimental to patients with celiac disease or DH. However, we do recommend gluten-free lip products, hand lotions and other products that may end up near the mouth. And, in the case of children, a gluten-free shampoo would be wise.

LookingforAnswers15 Enthusiast
LookingforAnswers15
Posted

Fiveoaks,

 

it sucks being diagnosed but you will do everything you can to adopt to this lifestyle. I am sorry that you have to go through this as well but it is better that you know now. While it must be difficult to also know that your husband has diabetes, you two have each other to support and lean on. If anyone will be able to understand what you are going through, it will be him since he also has health issues that affect his daily life. As many will say, it is a lonely disease but luckily you have a lifetime partner. I have been disappointed by many people and their comments such as "so, the only things happening in your life are health problems". 

 

Also, it is good that you know about your lactose allergy. It will just help you heal faster knowing you need to avoid it. I am really upset with my doctors. They did not test me for any of these allergies and vitamin deficiencies, knowing that I do have celiac. At that time, although I was like you and trying to learn as much as possible in a short time, my brain did not even work well to make this connection. I continued to probably hurt myself by occasionally drinking milk and eating ice-cream.

 

I know it sounds awful now but it can get much better. I accepted having it and I truly do not even care what I can eat as long as it is good for my body. I used to love food but now I just eat because I have to. I only pray that I do not have other autoimmune diseases. 

 

Take a deep breath!!! Good luck!

cyclinglady Grand Master
cyclinglady
Posted

I am sorry that you were diagnosed with celiac disease! As far as being overwhelmed, we have all been there and have survived! It is a lot to process!

I am diabetic too (not the only one on this forum). I found that fat is my friend, my cholesterol panel has never been better. My husband and I are both gluten-free and on a LCHF diet. I just eat to my meter. I do not eat processed junk food except when traveling and when I am in a pinch. Staying on the gluten free diet always trumps the diabetic diet! Always!

The good news is that you, with time, may get that dairy back with healing. Give it six months or so. Then introduce hard cheeses, yogurt first or lactose free milk. Remember, that for a while anything might bring on your GERD symptoms until you start to heal.

i am glad that your diagnosis was caught. Encourage others in your family to get tested as this is a genetic disease. You may save other lives besides your own!

We are all in the same boat and are here to help!

bartfull Rising Star
bartfull
Posted

And just to let you know, all Blistex products are gluten-free, and IMO they are better than Chapsick anyway. Lipstick? There are lots of threads here on that topic. My favorite is NYC - New York Color. It is VERY inexpensive. I get it at Family Dollar. I believe that most Suave shampoos are gluten-free too, and of course THEY are inexpensive. The reason you may want a gluten-free shampoo is that sometimes it gets up your nose and then you swallow it. I already used Suave so it was no big deal to me.

Mel75 Newbie
Mel75
Posted

I lost my Dad two years ago to Gastroesophageal cancer!!! That's pretty much why I got scoped cause of pure fear and a few symptoms! I'm sorry for the loss of your uncle and I hope your Dad fights hard!

My biopsy showed possible Celiac but blood work was negative. I'm in limbo right now. I understand how you feel! Hang in there.

nvsmom Community Regular
nvsmom
Posted

((hugs))

 

Most of us went through the same frustration and grieving period.  You're not alone.  I promise that if you hang in there, it will get easier within a few months; by Christmas I bet you'll be in your groove.

 

Like the others said, the healthiest and simplest way to eat gluten-free is to NOT use gluten-free replacement foods like breads, muffins, and crackers.  Those foods are expensive and loaded with sugar, plus they use a LOT of starches (potato, tapioca, corn) which I swear turns to glucose the minute it touches your saliva.   (I'm prediabetic and eating LCHF too.) It is better to just avoid those foods and focus on meats, veggies and some fruits.  I don't eat grains anymore, but corn, rice, and quinoa are gluten-free; and a potato is a popular side dish (although I skip those too).

 

Ditto about dairy. I was able to use cream and cheese after about a year gluten-free.  If you give it time, there is a good chance that you can eat it again.

 

BTW, celiac disease is genetic so your siblings and children should be tested every couple of years to make sure that they haven't developed it.

 

Hang in there!

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