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

Hello


SharonF

Recommended Posts

SharonF Contributor

My name is Sharon, and I just had some bloodwork and a colonoscopy and endoscopy done last month. My doctor has about 80% certainty that I have celiac, so he suggested I go gluten free for 6 months, and then do another biopsy.

I'm finding switching over to the gluten-free diet to be challenging, in the least. It's frustrating that gluten-free foods are so much more expensive. I do appreciate that some manufacturers list gluten-free foods on their websites--although I do have some doubts about whether Cheetos are really gluten-free as they say.

Hello, and sorry if I posted this in the wrong forum.


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



Celiac.com Sponsor (A8-M):



catfish Apprentice

I know what you mean about "challenging". It took me a while to figure it out too, and believe me I made a lot of mistakes (like spelt for instance, NOT gluten-free). I finally stopped buying processed food entirely for a while because it seemed like everything had some form of gluten in it! I quit eating out for a while too. Now I have worked a small amount of processed food back into my diet, and there are a few choice restaurants that i trust but most of my food is prepared in MY kitchen by ME. That's the only way I can be sure. And of course it takes time and effort to learn how to cook gluten-free (especially if you don't already know how to cook- I was lucky in that respect at least). But eventually you'll get used to it, really. In the meanwhile, I learned that corn chips, rice and potatoes are my starchy friends, I also learned not to over do the fruits and vegetables at first, your guts won't thank you.

tarnalberry Community Regular

welcome! I hope the diet does help you. It can be hard at first, but catfish is right, once you get the hang of cooking, it really isn't that bad. (I really do seem to post this all the time... maybe I should change my signature to include it? ;-) ) Sticking with naturally gluten-free staples will help you keep it less expensive and easier. A LOT of recipes are NATURALLY gluten free. Rice, potatoes, corn, and yams are all good, common, inexpensive carbohydrate sources that can be used in a myriad of ways with a myriad of flavors (so you don't have to get bored of any particular one). All natural meats (no broth injected, or the like) are gluten-free as well, and of course there's a WIDE variety of types, and ways of cooking that can allow you to maximize small amounts of the cheaper cuts. Same thing with the produce aisle. (And the spice aisle. Spices can get expensive, but they last a long time, and make a HUGE difference in how things taste.)

crc0622 Apprentice

Sharon,

Upon diagnosis, I too ran to my local healthy food store and bought a bunch of processed gluten-free stuff I didn't think I could live without. Well, most of those are still in the cupboard because I just don't eat much of the specialty stuff. There are a lot more options in your regular store than you realize. (Yes, Cheetos are gluten-free, even though some don't eat them due to cross contamination issues I have never had a problem with them.)

I have found that the only thing I really can't find in a regular store is soy sauce (the jury is out on whether LaChoy is really gluten-free). I have purchased some cake, cookie, brownie mixes via mail order but requested that my commissary carry them AND THEY DO NOW! (I'm a Navy wife.) I did mail order some ready-made cookies, cinnamon bread and pizza crusts from Kathy's Creations and put them in the freezer. I'll eat a cookie every couple of days or so. I made my own mixes and put them in the freezer. That way if someone else is having sweets, I can too. I also bring them to work with me.

I also found that Publix carries some cereals that are gluten-free and SuperTarget has a couple of Bob's Red Mill items that are gluten-free (not all are, though - watch the label - it will say gluten-free).

I primarily eat meat, fresh veggies, potatos, rice, fruit. I have never had a problem with fruit that many have when first gluten-free. I love the stuff. We always try to make enough at supper to have leftovers for my lunch the next day. Eating out is not only difficult, it is very RISKY - always!

Pay attention to your body - it may be good for you to keep a food diary of EVERYTHING you eat for the first month or two because it's easier to figure out where you might slip up that way. Read all you can - there are other forums besides this one that are good, too. You can join as many as you have time to read! I regularly visit 3: delphi, yahoo sillyyaks and here. All have a different "specialty" or flavor and you'll quickly develop a favorite.

Good luck and hang in there.

Celeste

CoolCat1 Rookie

Sharon, i was just recently diagnosed in July. I found out that in Canada there is an income tax form that gives you back the difference in cost. I keep all my receipts. Hope you live in a country that does this.

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. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      2

      Related issues

    2. - MogwaiStripe replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?

    3. - knitty kitty replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      16

      Gluten Issues and Vitamin D

    4. - knitty kitty replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,248
    • Most Online (within 30 mins)
      7,748

    Tc clark
    Newest Member
    Tc clark
    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

    • Mari
      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
    • MogwaiStripe
      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks without getting my head and shoulders inside their cages, and so the particles from their food would be all over my hair and top of my shirt. Then I had to drive home, so even if I didn't get glutened right then, the particles would be in my car just waiting for me to get in the car so they could get blown into my face again. I gave up that volunteer gig and stopped getting glutened so often and at such regular intervals.
    • knitty kitty
      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine.  Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes.  HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc.  Thiamine deficiency inside a cell triggers a toggle switch on the gene which in turn activates autoimmune diseases carried on the gene.  The reference to the study is in my blog somewhere.  Click on my name to go to my page, scroll down to the drop down menu "Activities" and click on blogs.  
    • knitty kitty
      Hello, @annamarie6655, Yes, there's many of us who react to airborne gluten!   Yes, animal feed, whether for chickens or cats or dogs, can release airborne gluten.  I can get glutened from the bakery section at the grocery store.   The nose and mouth drain into the digestive system and can trigger systemic reactions.   I find the histamine release in response to airborne gluten will stuff up my sinuses and bother my eyes.  High histamine levels do cause anxiety and migraines.  The muscle spasms can be caused by high histamine, too.  The digestive system may not manifest symptoms without a higher level of gluten exposure.   Our bodies make an enzyme, DAO (diamine oxidase), to break down histamine.   Pyridoxine B 6, Cobalamine B12, Vitamin C, copper, zinc, and iron are needed to make DAO.  DAO supplements are available over the counter.  Taking a B Complex supplement and additional Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) helps reduce the amount of histamine being released.  Mast cells without sufficient Thiamine have an itchy trigger finger and release histamine at the slightest provocation.  Thiamine helps mast cells refrain from releasing their histamine.    I find taking additional TTFD thiamine helps immensely with neurological symptoms as TTFD can easily cross the blood brain barrier without a carrier.  High histamine in the brain can cause the muscle spasms, anxiety and migraines.  Vitamin C really helps with clearing histamine, too.   The Digiorno pizza mystery reaction could have been caused by a reaction to the cheese.  Some people develop lactose intolerance.  Others react to Casein, the protein in dairy, the same as if to gluten because Casein resembles the molecular structure of gluten.  An enzyme used in some dairy products, microbial transglutaminase, causes a gluten reaction because it is the same as the tissue transglutaminase our bodies make except microbes make it.  Those tTg IgA blood tests to diagnose celiac disease measure tissue transglutaminase our bodies release as part of the autoimmune response to gluten.   You're doing great!  A Sherlock Holmes award to you for figuring out the connection between airborne gluten and animal feed!!!  
    • Scott Adams
      This article may be helpful:  
×
×
  • 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.