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

I Am A Bit Scared And Confused.


DottieB59

Recommended Posts

DottieB59 Newbie

I am 59, have had 3 bouts of sudden drastic anemia in the last 22 years. I have been to some highly respected Dr.s-but no one ever mentioned that I could have a disease called Celiac. I have not felt good this summer. I am a painter and have not held a brush in 2 months. I have always been moving, not now. Will this go away? I have to believe that I will feel better again-won't I? I have a great GP that asked me what I was working on. When I answered "Nothing right now", he sent me to a digestive Dr. within 5 days. I had both scopes. I have to have hernia surgery caused by the hernia rubbing the stomach till its causing me to lose blood. I feel so sorry for these little villi. I never knew I had them! Now they are flat. Can they recover? Can I have a glass of white wine? My sweet husband is out of town this week. I guess I am lucky that this was found by accident. Sorry to be such a downer but it is all so new and I am scared to death. Thanks to all of you that post-you are such a help.


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

I'll have a glass of wine, too!

Unless that bothers the hernia? Probably not but if it does, get that sucker fixed fast!

I found that many things I already ate are gluten-free - BBQ chicken, potatoes in various ways, corn tortillas, chicken rice veg soup, chili, Chex cereral, wine, Grand Marnier, cheese, etc. Some people delete dairy for awhile because it's hard to digest until the villi heal. I just cut back a little, hard cheeses and yogurts aren't as hard to digest as a glass of milk.

Read around on herer. In the upper right corner is a google box. If you want to find something, you can use that. Look at the what's for dinner and breakfast threads for some ideas of what people eat. Products can vary by country and over time, so check the date of posts and country if needed.

cheers!

P.S. I'm not throwing the whole shebang at you. You sound like you need a day or two to process and get used to the idea. Start with the obvious stuff like wheat and malt in products. Get back to us for more intensive stuff in a couple of days.

GlutenFreeManna Rising Star

Welcome! Yes it does get better! You're just overwhelmed right now. Just take things one day at a time and you will probably be back to painting in no time. Stick around and read all you can and post your questions all you want. I'm artist myself but just for a hobby not for a profession. I just painted my first work in a long time today. And then it occured to me that I didn't feel too tired to paint (or do other things that I love) anymore. I felt like doing ten more! Hopefully you'll get there too. Be sure you are treating you anemia (and any other vitamin deficiencies) it with iron supplements that are gluten-free. Your dr should do a follow up testign in 6 months to a year to make sure you are adhearing to the gluten-free diet and healing.

Bubba's Mom Enthusiast

The thought that you have a disease and must treat it by never consuming gluten again can be very overwhelming at first. Take some time to read about it and the good foods you CAN have.

At first, it's best to stick to whole foods like fresh fruits, unprocessed meats, and later..once your villi heal..add dairy. You can still have wine! ;)

As you heal, and with strict adherance to the gluten-free diet, along with vitamin suppliments, you will find your energy and passion for your work will return.

I'm a quilter and am newly diagnosed. I have good days and bad days. On my good days I feel like doing a little work. On bad days..I don't touch it at all. You will probably be the same?

The best of luck to you. Knowing what's causing your problems is the start to a whole new healthy life for you.

Be sure to check the google links on the page here for topics that especially interest you, and be sure to post any questions or comments you have. :D

eatmeat4good Enthusiast

Your "baby villi" will recover....just be nice to them and they will reward you with recovery of your energy, health, and painting too! It just takes a little time and due diligence. They are very forgiving little guys. They seem to grow back readily once gluten is stopped. :)

DottieB59 Newbie

Oh my goodness! You have all made me feel so much better! It is just over whelming at first.

I had the intraveinious iron at the hospital 3 days ago.

GlutenFreemanna I can't believe you had the skin thickening on the bottom of your feet also! I have been to countless dermatologists trying to get an answer! I have never heard of anyone with it. I thought I was the only one. I am thrilled to know my little villi will get better. I keep patting my tummy and telling them they'll be better. Thank you all from the bottom of my heart!

GlutenFreeManna Rising Star

Oh my goodness! You have all made me feel so much better! It is just over whelming at first.

I had the intraveinious iron at the hospital 3 days ago.

GlutenFreemanna I can't believe you had the skin thickening on the bottom of your feet also! I have been to countless dermatologists trying to get an answer! I have never heard of anyone with it. I thought I was the only one. I am thrilled to know my little villi will get better. I keep patting my tummy and telling them they'll be better. Thank you all from the bottom of my heart!

Wow, you HAVE been reading here a lot! I thought perhaps I was diabetic because whenever I looked up thick skin on feet I came up with diabetes but my blood gloucous tests were always normal. Anyway, rest assured your feet and the rest of you is going to get so much better in 6 months to a year.


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



Celiac.com Sponsor (A8-M):



GFinDC Veteran

Hi Dottie,

welcome to the site. There is lots to learn about celiac when you are new to it. But getting started on the diet can be pretty simple. Eating whole foods and avoiding processed foods will get you a long way. Most people have no problem with wines, and there are also gluten-free beers available and rum and vodka.

You can find gluten-free breads in many stores in the freezer section. Some stores mark their gluten-free items with a green sticker.

All in all you will probably feel better and be eating healthier after going gluten-free. There is sometimes and adjustment period for several weeks or more digestion is kind of upset. Not all people have that though.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,133
    • Most Online (within 30 mins)
      7,748

    Exhausted-momma
    Newest Member
    Exhausted-momma
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
×
×
  • 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.