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New Member, Newly Diagnosed

Jireh

By Jireh
in Coping with Celiac Disease

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Jireh Newbie
Jireh
Posted

Hey Everyone,

 

This is my first post here. I've had a pretty crappy couple of months. My mom was recently diagnosed with lung cancer. Two months later she died at the end of October. A couple of weeks later I was diagnosed with Chronic Lymphocytic Leukemia (CLL). The very next day I was diagnosed with Celiac disease. So I'm trying to come to grips with my mom passing away and the idea that I have a form of cancer and now I have to completely change my diet. When it rains, it pours, I guess.

 

I had heard the term gluten but I had no real idea what it was. I just thought it was something to avoid in some kind of fad diet. So I've been reading everything I can about Celiac disease, gluten, etc. I'm still learning the code words for gluten when reading ingredients.

 

I'm a picky eater with a relatively small menu of foods I will actually eat so I have been struggling. But today I went exploring and found quite a few good options at Meijer. I've found replacements or alternatives for most of the things I was eating before. Except bread. I'm going to look into making my own (or asking my wife to make it) and see how that goes.

 

I've been under so much stress lately and I have swollen lymph nodes in my stomach so it's hard to say how much and what part of my pain is Celiac related. But I have been strictly gluten-free for the past week. I do feel much less bloated and less gassy. And my pains were never severe but they have subsided somewhat.

 

Anyway, I just wanted to introduce myself and get in on the conversations. Thanks in advance for all of the experience and info I am sure to glean from this place!

 

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squirmingitch Veteran
squirmingitch
Posted

HI & welcome to the board! 

First off huge hugs for you ((((((((((((((((( Jireh )))))))))))))))))))))))))))))

You've been through the wringer lately. I'm so sorry about your mom. And on the heals of that you find out you have 2 big health issues. The celiac at least is not a big deal now that you know about it & eat strictly gluten free. Make sure to read the Newbie 101 as there is a lot more to eating gluten free than reading the ingredients on labels. You need to take certain precautions against cross contamination (we call it cc) such as dedicated cutting boards, colanders, toasters and so forth. Here's a link to the Newbie 101

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

 

Read as much as you can on forums here & you will learn a ton. Ask any questions even if they seem silly.

SMRI Collaborator
SMRI
Posted

Sorry about your mom.

 

gluten-free bread--which ones have you tried?  I like the Udi's.  You find it in the freezer section as the shelf live is short.  I'm not much of a sandwich person but I like it toasted.  I recently tried the Glutino Englsh Muffins.  They don't look very good but they taste pretty good.  Other's have said that Aldi has a shelf-stable "wheat" bread that is very good.  I haven't been able to find it in my Aldi though.

Jireh Newbie
Jireh
Posted
  • Author

Thanks, Squirmingitch. Yes I realize the cross contamination can be a gotcha. I have been limiting myself to products that explicitly say "Gluten Free" on the package. Thanks so much for the info!

 

SMRI, I tried some frozen bread I found at Kroger but I can't remember the brand. Like you, I toasted it and it was ok. Definitely not good otherwise. I found some not frozen (notice I didn't say fresh) bread at Meijer. It wasn't frozen but it just felt stale. It was ok toasted. I just miss that soft, fall-apart-in-your-hands bread! But really it's ok - I probably just miss it because I can't have it.

 

We have a couple of Aldi stores near here. I think I will check them out this weekend once all the black Friday shoppers go home! :)

 

Thanks for the welcome and the tips!

nvsmom Community Regular
nvsmom
Posted

I'm sorry for your loss.  :(  You've had a horrible few months.  I hope 2015 is a better year for you.  

 

Eating gluten-free takes some time to get used to.  Many of the gluten-free substitutes are not in the same class as the wheat flour products, and it will be a few months until you are used to eating this new way.  Bread is definitely a tricky one.  We usually have Udi's in the house but I only like it for toast.  There are some nice recipes for gluten-free bread out there and I'm sure you'll find one you like over the next few months.... The Baking forum might be able to help with that..

 

Welcome to the boards.  :)

Jireh Newbie
Jireh
Posted
  • Author

Thanks, nvsmom - yes, I am hoping for a good 2015!

 

I will check out the baking forum immediately! :)

1desperateladysaved Proficient
1desperateladysaved
Posted

Welcome,

 

Oh, wow, just celiac starts out overwhelming at first!  I hope you will have some down time to cope with all the pains.  I hope you will be brought through and overcome the struggles.

 

Dee

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Jireh Newbie
Jireh
Posted
  • Author

Welcome,

 

Oh, wow, just celiac starts out overwhelming at first!  I hope you will have some down time to cope with all the pains.  I hope you will be brought through and overcome the struggles.

 

Dee

 

 

Thank, you. Yes, some downtime will be nice. I go for a bone marrow biopsy on Monday so I'm not looking forward to that. Then I will get the full cancer results on the 17th. Hoping for a good Christmas report! :) 

 

In the meantime I am committed to staying gluten free. I have been pleasantly surprised by the choices I have found. We're having some family over tonight for pizza so I will be trying gluten-free pizza for the first time. I have no expectations so I'm hoping that keeps me from being too disappointed!

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    • Rogol72
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Rogol72 · Posted

      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying it once. https://www.warburtonsglutenfree.com/warbs_products/white-loaf/ The only gluten-free bread that I've come across that is fortified is Schar with Iodized salt, nothing else.
    • Scott Adams
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      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Inconclusive results

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    • JoJo0611
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      By JoJo0611 · Posted

      Thank you. 
    • deanna1ynne
      Inconclusive results

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