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New And Struggling With Acceptance

GoldyLocks

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GoldyLocks Newbie
GoldyLocks
Posted

Logging in for the first time and posting.

My story is long but the highlights include a laundry list of classic celiac and gluten intolerance symptoms (including fatigue, depression, abdominal pain, peripheral neuropathy, joint pain and a rash that is suspect for DH). I tried an elimination diet in June and all of my symptoms disappeared/improved. I stopped the diet and eat like I used to in July but realized in Mid July that my symptoms were returned-most notably I was having to take ibuprofen twice a day again for joint pain.

So I went back on the elimination diet in August. When I challenged gluten I got sick. I had a CCed gluten free pizza and got very sick. Then, because I'm stubborn, I had a bite of a donut and got so sick I contemplated goign to the ER; instead I called my doctor. I go in for blood tests next week.

For the past week I've been gluten free. But, again because I'm stubborn, I challenged gluten again today.

This morning I felt great, now I feel like hell.

The results of the diet eliminations and challenges are clear. I'm intolerant of gluten. If I don't eat it I feel better than I have in 15-20 years. When I eat it I get sick (above symptoms and more).

So, I'm joining the board.

On one hand I'm holding out some hope for the blood tests but on the other, I believe now that the gluten exposure reactions are real and not coincidence or in my head.

I'm relieved and very sad.

the bright side is that my husband is very much on board with this and has already begun looking at food to see if its gluten free. He sees how much better I feel when I'm not eating gluten and actually got mad at me today for eating it "just to see."

I realize the blood tests my end up skewed by the amount of time I've been gluten free this summer but at this point I understand that in order to feel healthy I need to be gluten free; the blood tests will only help with a Dx of celiac and, again, that won't change my eating habits.

I'm here, I'm gluten intolerant and I'm really ticked off right now.

thanks for reading.

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rosetapper23 Explorer
rosetapper23
Posted

GoldyLocks,

Welcome to the board! And please don't be too mad--you finally know what's been making you sick all of these years, and that's wonderful! I was mad when I couldn't figure out what was wrong with me for 47 years! Eating gluten free doesn't have to be difficult. At first, you should concentrate on eating only natural whole foods (though you probably know this from past experience), and once your gut heals, you can add gluten-free processed foods into your diet. How sweet that your husband is trying to find gluten-free food for you. I can think of only one thing that I can't find gluten free: croissants. So if he finds that, please let us know! Otherwise, I can find everything else, including burritos (made by Glutenfreeda, and they can be found with the regular frozen burritos at Whole Foods and other healthfood markets). Kinnickknick makes great donuts that taste just the ones my mom used to make for us. Udi's and Rudi's both make great bread, and Against the Grain makes wonderful baguettes and pizzas.

I'm glad to hear that you intend to follow a gluten-free diet regardless of the outcome of your blood tests. You won't be sorry!

GoldyLocks Newbie
GoldyLocks
Posted
  • Author

GoldyLocks,

Welcome to the board! And please don't be too mad--you finally know what's been making you sick all of these years, and that's wonderful! I was mad when I couldn't figure out what was wrong with me for 47 years! Eating gluten free doesn't have to be difficult. At first, you should concentrate on eating only natural whole foods (though you probably know this from past experience), and once your gut heals, you can add gluten-free processed foods into your diet. How sweet that your husband is trying to find gluten-free food for you. I can think of only one thing that I can't find gluten free: croissants. So if he finds that, please let us know! Otherwise, I can find everything else, including burritos (made by Glutenfreeda, and they can be found with the regular frozen burritos at Whole Foods and other healthfood markets). Kinnickknick makes great donuts that taste just the ones my mom used to make for us. Udi's and Rudi's both make great bread, and Against the Grain makes wonderful baguettes and pizzas.

I'm glad to hear that you intend to follow a gluten-free diet regardless of the outcome of your blood tests. You won't be sorry!

Rosetapper

Thank you for welcoming me. I've been a little lazy about my diet this week and angry so I didn't eat much this week. I did stay gluten-free until today and like I said, the results of the test today are clear. My body doesn't like gluten. And while I am stubborn and pigheaded, I also like feeling healthy and happy.

I have some hope and relief but it's mixed with feeling angry and sorry for myself.

again, thanks for welcoming me!

squirmingitch Veteran
squirmingitch
Posted

Your feelings are normal GoldyLocks. I think we all pretty much went through them. Welcome aboard!!!!! And I will echo rosetappers thoughts about how sweet your hubby is being about this. Does he plan to go gluten-free too?

And here's a link --- I don't know who will enjoy it more -- you or your hubs.

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

GottaSki Mentor
GottaSki
Posted

Welcome Goldylocks!

This I can tell you - it will get easier with time. The learning curve is tough - I was in tears reading labels at the grocery store my first weeks gluten-free, but that soon passed.

Although it may not be easy - you are way ahead of the game knowing that gluten is definitely a problem for you AND you have a supportive hubby - that will make the transition much easier.

Poke around the forum - ask lots of questions - there is always someone popping on to answer them for you.

Hang in there - let the healing begin :)

GoldyLocks Newbie
GoldyLocks
Posted
  • Author

Your feelings are normal GoldyLocks. I think we all pretty much went through them. Welcome aboard!!!!! And I will echo rosetappers thoughts about how sweet your hubby is being about this. Does he plan to go gluten-free too?

And here's a link --- I don't know who will enjoy it more -- you or your hubs.

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

My husband isn't planning on going gluten free himself, at least not right now, but he did say it will be easier and better for me if the household is gluten free-as much as possible. Instead of one shelf of gluten-free food, we'll have one shelf of gluten foods for him and the kids. And when we go out to eat we'll go to places that have gluten-free menus and are careful about CC. I have some friends in the area with Celiac so they're helping me out.

Thanks for welcoming me. I'm sure my self-pity and obsession with this will wear thin on my family very soon so having found this place is comforting and a relief.

squirmingitch Veteran
squirmingitch
Posted

We're here when you need us. It's allowed to whine, cry, pitch a hissy fit & gripe here. We've all done it.tongue.gif

That sounds like a good plan & your hubs deserves major kudos for it. Give him some extra attention.

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GFinDC Veteran
GFinDC
Posted

Hi Goldylocks,

Well, that's what you get for eating all the porridge! Those bears didn't do nuthin' to you. :) Sorry, couldn't resist. It is a big change going gluten-free for most people. Having celiac means you have an incurable autoimmune disease, and that can be an emotional realization. But it is probably the best autoimmune disease you can have, as it can be controlled with diet alone.

Since celiac is hereditary, your children should be tested also, and all first degree relatives. There is a very good chance your antibody tests will be negative though since you have been mostly gluten-free for a while. Usually the process is to get blood antibody testing first, and then an endoscopy taking 5 to 6 biopsy samples to test for villi blunting. But in your case your body is giving you clear indications that it doesn't like gluten. So if you want to skip any more testing and just do the gluten-free diet that is fine IMHO. We need to avoid wheat, barley, rye and sometimes oats.

And leave those bears alone! :D

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

FAQ Celiac com

http://www.celiac.co...celiac-disease/

Newbie Info 101

http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?

http://www.celiac.co...reakfast-today/

What Did You Have For Lunch Today?

http://www.celiac.co...or-lunch-today/

What Are You Cooking Tonight?

http://www.celiac.co...ooking-tonight/

Dessert thread

http://www.celiac.co...399#entry802399

Easy yummy bread in minutes

http://www.celiac.co...ead-in-minutes/

How bad is cheating?

http://www.celiac.co...t-periodically/

Short temper thread

http://www.celiac.co...per-depression/

Non celiac wheat sensitivity article

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GoldyLocks Newbie
GoldyLocks
Posted
  • Author

I go in Wednesday to see my doctor; I plan on asking for the Celiac blood panel tests. I'm nervous about the conversation with my doctor although I have every reason to believe he'll be open it. He's been very supportive of me in the past. I've just never gone to the doctor with such a clear request for testing.

squirmingitch Veteran
squirmingitch
Posted

Goldy, you do realize that the celiac panel may turn up negative simply b/c of the time you have been gluten free don't you? It has false negatives even when ppl have been consistently eating gluten & more so when they have been gluten light or gluten free.

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