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Just Diagnosed 2 Months Ago

tka

By tka
in Coping with Celiac Disease

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tka Apprentice
tka
Posted

I was diagnosed with celiac disease 3 months ago via blood work, then biopsy. Diagnosed with Hashimoto's over 15 years ago.  Both of my brothers and my sister also have thyroid disease.  I kind of got myself diagnosed.  I had been sick, having to take antibiotics 8 times from September to March.  Just couldn't stay well.  After over ten years on the same thyroid meds, all of a sudden I was terribly exhausted again.  My B12 and D3 levels were very low and thyroid levels very low too. My hair was falling out at an alarming rate.  Stomach troubles worsened and headaches and fogginess increased.  Then I got weird, itchy bumps and blisters on my elbows. 

 

After looking those up online, I felt I had DH.  My dermatologist was not a lot of help and said the test for that was difficult to get a good reading from because not many labs knew how to do it well.  She sent them off anyway, but they came back negative.  So I went to my GP and asked him to do the blood tests for Celiac Disease.  I convinced him I had enough symptoms to do it.  When the tests came back, he was shocked.  As soon as I had the test, before even getting the results, I started the diet and was feeling better.  He was just going to put me on the diet, but after reading several things on this forum, I decided to contact the specialist for the biopsy, which came back positive, but he said the villi were only partially atrophied.  I'm not suppose to go back for a year to test to see if they are healing. (I did go back on the gluten before having the biopsy for about a month, thanks to this forum too.) 

 

I have still been having trouble with getting glutened when I eat out.  I have not knowingly eaten anything with gluten and mostly have been ok.  Just had lots of different blood tests today because I am still feeling really tired.  I'm taking extra D3 and B12 and doc as increased my thyroid meds, but can't seem to get the energy back yet.  I know it's soon.  My gluten cycle seems to be taking this form: 

1.  Glutened

2.  Within 15-20 minutes, gas and tummy probs.  Acid reflux is really bad too. Those last about a day and half to two days.  I can make them considerably less by taking Imodium and GasX...lots of GasX... and Pepcid Complete.  I have to watch what I eat after that for a couple more days as my tummy gurgles and I belch and continue to have some gas, but not near the level of the first two days.

3.  Starting toward the end of the second day, I get a humongous headache that no meds can touch. That can last a day or two.

4.  The headache then gives rise to severe exhaustion. 

 

In all, it seems to last about 4-5 days, although the exhaustion can linger.

 

I know everybody is different.  I am concerned about how I am going to handle all of this when I go back to work.  I teach and luckily have been off for a while since diagnosed.  The reactions are much worse since going on the diet.  Do any of you have suggestions?   Thanks so much head of time.

Tammy

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AlwaysLearning Collaborator
AlwaysLearning
Posted

What you are describing is pretty much what most deal with. So far, I have gotten glutened every time I have eaten out with the exception of sushi (though I still have to be careful). So I have stopped trying to eat out. Facing the prospect of having 4-5 days of bad reactions is enough to make me not want to risk it. Sometimes it sucks, but I've become a much better and more adventurous cook since going gluten free. 

Some ideas:

• To socialize, throw dinner parties, picnics, or barbecues at your place. Track down some gluten free beers and have some friends over? Even a pot luck means that at least what you bring will be gluten free.

• If your local grocery stores don't carry them, lots of gluten-free foods are available online, and many grocery stores will special-order items for you even if they don't stock them in store. And if your local store doesn't carry much in the way of gluten-free, definitely seek out stores that specialize in organic and natural foods as they are the ones most likely to cater to gluten-free diets. You could order/buy just a few special gluten-free items that help make you feel as if you're not being deprived. 

• Perhaps you can head over to the recipe section of this forum to ask for recipes for a few of your favorite dishes. Making a big pot of soup or chili should be really easy to do gluten free and can freeze up for multiple work-day lunches.

• I'd also do a little more research into what standard foods are naturally gluten free so that you can make better use of the foods that are readily available. If you don't have to avoid milk, corn, or soy, you have a ton of options available to you.

• If you aren't all that eager to start cooking for yourself more, find some inspiration like the food channel, online recipe sites or blogs, or start your own blog about your gluten free journey. For me, I get inspiration in two ways - buying some new kitchen pan, dish, or utensil that I have to find a use for, or applying my grocery-shopping rule that I have to try one new thing every time I shop.

Yeah, it isn't easy, but I wouldn't dream of knowingly subjecting myself to gluten ever again. And the good news is that as more and more people and medical professionals figure out gluten allergies, businesses will create more options for us in the stores, and I can only hope, in restaurants!

howlnmad Newbie
howlnmad
Posted

Eating out is no longer your friend. Yes there are restaurants that offer gluten free menus but you're going to have to do some homework. Just because they offer this doesn't mean that they have a dedicated prep area and use dedicated pots and pans and such.

 

Have you cleaned out your own pantry and cabinets? Get rid of the plastic containers, they may have scratches that have gluten. Your nonstick pans too. Try to go with all stainless cookware or be sure it's safe and keep it dedicated.

 

As for what to do about eating when you return to work............. Brown bag it. It's the safest way.

tka Apprentice
tka
Posted
  • Author

Eating out is no longer your friend. Yes there are restaurants that offer gluten free menus but you're going to have to do some homework. Just because they offer this doesn't mean that they have a dedicated prep area and use dedicated pots and pans and such.

 

Have you cleaned out your own pantry and cabinets? Get rid of the plastic containers, they may have scratches that have gluten. Your nonstick pans too. Try to go with all stainless cookware or be sure it's safe and keep it dedicated.

 

As for what to do about eating when you return to work............. Brown bag it. It's the safest way.

EEW! I hadn't thought about the plastic containers. I'll have to deal with that. Thanks much.

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