Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Help!


yitzw

Recommended Posts

yitzw Newbie

My wife was just diagnosed with celiac disease about a week ago. There's SO much info online, but it's too vast to assimilate. Is there anywhere someone knows of to get a "crash course" on celiac disease? My wife's doctor has not been really helpful - his whole explanation of the issue is that she'll have to stay away from wheat products and watch what she eats.

Are there different levels of celiac disease? Are the treatments the same anyway?

I see that many people with celiac disease get sick from gluten - so it's easy to see that in that case you'd need to be very careful. My wife (thankfully) gets no visible adverse reactions, but it causes her body to be unable to absorb vitamins properly. I wonder if that means she can have glutens occasionally?

HELP!

I'm a concerned and clueless husband!

Yitz Weiss


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



angel-jd1 Community Regular

First of all I want to say WOW, you are a great husband for helping her with all this. That is great!! She needs your support now and you are doing a great job.

The best way to learn is just jump right in!! This is a good place to start, I have learned the most from message boards.

You are overwhelmed with information right now, but it does get easier. You will learn how to read labels, learn what brands to trust, and what foods are good and not so good. Hang in there.

If your wife has celiac disease then she needs to avoid gluten TOTALLY. There are not levels of celiac disease, but there are levels of villi damage. The villi are the little hair/finger like things in the intestines that help us absorb those nutrients. Once she begins on the diet and avoids gluten the villi can heal and she can begin to start feeling better and getting her vitamins and minerals.

Many people do not have symptoms, just like your wife. Or sometimes they do not have "typical" symptoms. There are over 200 symptoms associated with celiac disease.

Hang in there, things will become easier.

-Jessica :rolleyes:

tarnalberry Community Regular

If she's celiac, she can't have gluten - period.

It can be a difficult change to make - it's certainly a big one - but there are plenty of ways of making it easier. The easiest way to start - in my opinion, and it's really just an opinion - is to keep out of the processed, pre-packaged foods. They have the additives and ingredients that are questionable. Stick to whole, natural foods that are gluten-free to begin with. That is, get your foods from the produce department (and meat counter, if you eat meat). There's plenty of fruit, vegetables (including starchy vegetables), and meats that will give plenty of fat, carbohydrates (and fiber), protein, and vitamins and minerals.

Then keep up with the reading, and learn about the other items that are gluten-free.

KaitiUSA Enthusiast

It's great to see you so supportive.

What has been said I agree with...there are not different levels of celiac ...you have it or you don't . If you have it you must avoid all of gluten.

https://www.celiac.com/st_main.html?p_catid=12

This is the link to this sites safe list and forbidden list for celiacs which might help you as a guideline since she is first starting off. It can be overwhelming at first because there is so much that can contain gluten. It gets easier and you have sites like these that can help if you have any questions. Good luck :D

plantime Contributor

This site right here is where I have learned the most about celiac disease. After I fully explored this site, then I took time to look at other sites. celiac disease is an all-or-nothing disease. You either have it, or you don't. The only way to control it is to go completely glutenfree. Keep coming back, ask any questions you have, read, read, read! Your help is something that will be invaluable to her. My hubby and two teens help me read labels. Without them, I would have many more accidents than I do have.

lotusgem Rookie

Dear Yitz,

as the others have said, it DOES get easier in time. There is so much that you can learn just using the internet. Know that now your wife will need to be mindful of other things such as shampoo, lotions, soap...topical preparations. Buy only the gluten-free brands. Also, licking stamps or envelopes should be avoided. Gluten can show up in many kinds of products. In my opinion, it is best to have a gluten free kitchen, otherwise, there will always be the danger of contamination. Things that you don't even think of, like buttering wheat bread, then dipping into a jar of jelly can make a Celiac sick (if she eats the jelly. ) We threw out our toaster and waffle iron, items that couldn't be immersed to be cleaned, and replaced them. An excellent cookbook that is immensely helpful is, "Living Well Without Wheat--The Gluten-Free Gourmet" by Bette Hagman. She is a Celiac, and is perhaps the most respected authority on the gluten-free diet. She has come up with some excellent recipes for baked goods as well as other dishes. She also explains how to avoid "hidden glutens" and describes the characteristics of the various gluten-free flours that are used in our baking. That is a fine start to becoming proficient as a gluten-free cook. My family has always enjoyed my cooking and that has not changed since they took up the gluten-free diet along with me. I am most grateful for their support, as I am sure your wife is for yours! You'll be fine.

Paula

Terri-Anne Apprentice

Welcome Yitz!

When we first deduced that my young son could no longer eat foods with wheat in them, I was totally overwhelmed! When you start reading labels, as your wife will be doing for the rest of her life, it seems wheat is slipped in almost everywhere!

I think the best 3 things I did to get a handle on what foods are safe to feed my son are:

1. Made an appointment with a Nutritionist/Dietician. We were very fortunate that she has a keen interest and knowledge about Celiac disease, and was able to give me so much information to look over and learn from, as well as answering my questions face to face. I think our first meeting was over an hour long, while my husband and I fired question after question at her, that she was able to answer fully and sympathetically. At our second meeting, she even brought a box of cereal as a little gift for our son! She was also able to give me a list of specific stores in our city that carry various gluten free products, as well as sample gluten free menu plans to get us started. She has made herself available via email any time for what ever questions pop up, and this is almost 3 years later!(We love you Ellie!)

2. Get in touch with a Celiac Support Group in your area if one exists. Ellie invited us to a Celiac Support Group meeting in our city, and offered us membership etc. Part of their membership package listed stores and which products you can buy where, ie store A may be best for buying soups at, where as store B is better for GlutenFree Flours. They discussed alerts over products that were once gluten-free but have changed ingredients, discussed travel experiences being gluten-free etc. Very informative and understanding of what your wife and yourself are going through.........they've ALL been there! They also have "meetings" where they get together and learn to cook/bake several gluten free recipes. When you try these things in a group, you pick up ideas you may not come up with on your own, and trying new ways/ingredients in your cooking is not as un-nerving! SO you might want to investigate to see if there is a Celiac Support Group in your area.

3. Visit Celiac.Com regularly!These folks are FULL of information and knowledge surrounding living a gluten free life. They are also a sympathetic ear when you need one, and celebrate your "little" triumphs, when they occur, with you! Come here often and ask as many questions as pop into your mind! Vent about how frustrating it is. Anything you say will be met with kindness and caring!I know this from experience!

So Welcome Yitz :D and may GOD BLESS YOU for being a caring and supportive husband. Remember this new way of eating is absolutely essential for your wife to maintain good health. Without it she is taunting cancer, thyroid disease, diabetes, and an almost endless list of ailments! Be her anchor when she feels like throwing in the towel! She'll need you! ;)


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • 3 weeks later...
Rikki Tikki Explorer

Welcome Yitz:

I agree with all of the above. Just don't be fooled into believing she can eat gluten once in a while, it does a lot of damage that she may not be able to see or feel now, but years from now it will take a toll on her body. It can cause infertility and many other problems.

Just take it slow and you will learn a lot of information from everyone on this site.

Sally

jmj0803 Apprentice

Yitz-

This website might help you start out Open Original Shared Link. I used it alot when my daughter was first diagnosed. It gives you listings of mainstream and specialty gluten free products. Hope this helps!

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - asaT replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      nothing has changed

    2. - nanny marley replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

    3. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      45

      Supplements for those Diagnosed with Celiac Disease

    4. - par18 replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is it gluten?

    5. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,342
    • Most Online (within 30 mins)
      7,748

    Muhammad
    Newest Member
    Muhammad
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • asaT
      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
    • nanny marley
      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me  I tryed lol , another was to have another blood test after consuming gluten but it makes me so bad I tryed it for only a week, and because I have a trapped sciatic nerve when I get bad bowels it sets that off terribly so I just take it on myself now , I eat a gluten free diet , I'm the best I've ever been , and if I slip I know it so for me i have my own diagnosis  and I act accordingly, sometimes it's not so straight forward for some of us , for the first time in years I can plan to go out , and I have been absorbing my food better , running to the toilet has become occasionally now instead of all the time , i hope you find a solution 🤗
    • asaT
      I was undiagnosed for decades. My ferritin when checked in 2003 was 3. It never went above 10 in the next 20 years. I was just told to "take iron". I finally requested the TTgIgA test in 2023 when I was well and truly done with the chronic fatigue and feeling awful. My numbers were off the charts on the whole panel.  they offered me an endoscopic biopsy 3 months later, but that i would need to continue eating gluten for it to be accurate. so i quit eating gluten and my intestine had healed by the time i had the biopsy (i'm guessing??). Why else would my TTgIgA be so high if not celiacs? Anyway, your ferritin will rise as your intestine heals and take HEME iron (brand 4 arrows). I took 20mg of this with vitamin c and lactoferrin and my ferritin went up, now sits around 35.  you will feel dramatically better getting your ferritin up, and you can do it orally with the right supplements. I wouldn't get an infusion, you will get as good or better results taking heme iron/vc/lf.  
    • par18
      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.