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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,559
    • Most Online (within 30 mins)
      7,748

    Valerie Ensor
    Newest Member
    Valerie Ensor
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
    • knitty kitty
      Hi, @Ginger38, I've had shingles in the past.  I understand how miserable you're feeling.   Not only do i have the chickenpox virus lurking about, I also have the cold sore virus that occasionally flares with a huge cold sore on my lip when stressed or exposed to gluten.  The virus lives dormant in the nerves on the left side of my face.  It causes Bell's Palsy (resulting in drooling).  The cold sore virus is also in my eye.  My eye swells up and my vision is diminished permanently whenever I have a flare, so it's of the utmost importance to keep flares away and treat them immediately if they do happen so I don't lose any more vision.   I take the amino acid supplement L-Lysine.  Lysine messes with the replication of viruses, which helps the body fight them off.   I haven't had an outbreak for several years until this year when exceptionally stressed and contaminated, it flared up again. Lysine has been shown to be beneficial in suppression of viruses like the cold sore virus (a herpetic virus), the chickenpox virus (also a herpetic virus), as well as the HIV virus, and even the Covid virus.   I also take additional Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) because Thiamine has antiviral properties as well.   For pain, a combination of Thiamine (like TTFD or Benfotiamine or Thiamine Hydrochloride), with B12 Cobalamine, and Pyridoxine B6 have been shown to have analgesic properties which relieve pain and neuropathy.    The combination of Thiamine B1, Pyridoxine B6 and Cobalamine B12 really does work to relieve pain.  I take it for back pain from crushed vertebrae in my back.  This combination also works on other pain and neuropathy.   I usually buy a supplement that combines all three and also Riboflavin B2 called EXPLUS online.  However, it's made in Japan and the price with the tariffs added makes it really expensive now.  But the combination of Thiamine B1, Pyridoxine B6 and B12 Cobalamine (and Riboflavin B2) still work even if taken separately.   I can't take Tylenol or ibuprofen because of stomach upsets.  But I can take the vitamin combination without side effects.  However, you can take the three vitamins at the same time as other pain relievers for added benefit.  The vitamins help other pain relievers work better. I hope you will try it.  Hopeful you'll feel better quickly. Interesting Reading: Thiamine, cobalamin, locally injected alone or combination for herpetic itching: a single-center randomized controlled trial https://pubmed.ncbi.nlm.nih.gov/23887347/ Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ Analgesic and analgesia-potentiating action of B vitamins https://pubmed.ncbi.nlm.nih.gov/12799982/ A Narrative Review of Alternative Symptomatic Treatments for Herpes Simplex Virus https://pmc.ncbi.nlm.nih.gov/articles/PMC10301284/
    • Mari
      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
×
×
  • 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.