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
DottieB59
Posted

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
kareng
Posted

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
GlutenFreeManna
Posted

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
Bubba's Mom
Posted

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
eatmeat4good
Posted

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
DottieB59
Posted
  • Author

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
GlutenFreeManna
Posted

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
GFinDC
Posted

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.

Go to topic listing

  • 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. Rejoicephd
      - Rejoicephd commented on Jefferson Adams's article in Gluten-Free Cooking
      1

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites

      Wow what a helpful article!! I am just seeing this now but I hosted a small group of family for Thanksgiving at my house this year and I did some of these things- got a butterball gluten-free turkey, got gluten-free stuffing, had a few gluten-free sides, and a gluten-free nothing-Bundt-cake. I had other non gluten-free things there too for others, and I also...
    2. Scott Adams
      0

      Rainforest Cafe Fined After Child's Severe Allergic Reaction: What It Means for Gluten-Free Safety

    3. marion wheaton
      - marion wheaton replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    4. trents
      - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a...
    5. BlessedinBoston
      - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,415
    • Most Online (within 30 mins)
      7,748
    KittyKatJill
    Newest Member
    KittyKatJill
    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

    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
×
×
  • 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.