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

1 1/2 Weeks Away From Testing

Craftycat

Recommended Posts

Craftycat Newbie
Craftycat
Posted

Hi,

Newbie here. A few doctors have mentioned Celiac disease to me and I'll be having an Endoscopy and Colonoscopy in about 1 1/2 weeks. Since researching this website, I discovered that I do have a lot of the symptoms. I'm especially happy to see that there are people who have gained weight with it. The doctor also suspects Crohn's disease, which is usually related to weight loss as well? I definitely don't have that problem. I not a big eater, but haven't been able to lose any weight for awhile now. I'm about 30-40 lbs overweight, but eat less than most people I know. I'm having a lot of pain in my lower right side, that radiates to my waist and aroung to my back. I don't have appendix or ovaries, so that's why the doctor feels it may be Crohn's disease. He said that is the area where the large intestine and small intestine connect and is typically where Crohn's disease starts.

I had some food allergy blood tests done back in 2001 and was found to be highly allergic to wheat bran. Also, some to soy, corn and very low to gluten. I went on a vegan diet (no meat or dairy) and was off wheat for about 7 months. (in 2001) Was also walking regularly and lost quite a bit of weight. My stomach and Fibromyalia symptoms were so much better and overall felt the best I had in a long time. However it was discouraging to be doing everything I thought was best for me and still feeling so tired all the time. I was still eating gluten though and now wondering if that was part of the problem? Also ate a lot of other grains.

Anyway the mystery will be over soon and I can figure out what diet is best for me. Even if the biopsy is negative for Celiac, I will probably try getting off of it and see how I feel. I'm so tired of feeling crappy and tired all the time. I get so confused as to what I should be eating or not eating. Nothing sounds good and I've lost my joy for cooking.

Appreciate any input or encouragement. Thanks

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

Celiac.com Sponsor (A8-M):


jennyj Collaborator
jennyj
Posted

I just want to say welcome and good luck. The tests are a little scary at first but when you think that they are being done to help you feel better they do not seem as scary. You will be in my thoughts and prayers.

Craftycat Newbie
Craftycat
Posted
  • Author
I just want to say welcome and good luck. The tests are a little scary at first but when you think that they are being done to help you feel better they do not seem as scary. You will be in my thoughts and prayers.

Appreciate your prayers. I'm just praying this will be an answer to my health issues and I can start to feel better soon. Would rather have something I can fix with diet, as opposed to something that requires medication. I've always had reactions to medications and don't take any on a regular basis right now. God knows what's best for me, and I will get through it.

I've had a pacemaker for over 9 years. I had a lot of complications with the first one and that whole ordeal was way worse. God brought me through all the procedures etc. and I know he'll get me through this as well.

Thanks for the encouragement

God Bless

gfpaperdoll Rookie
gfpaperdoll
Posted

Welcome to the board Crafycat.

That side pain stuff is fairly common, it should completely go away once you are gluten-free, I also suggest you just go dairy free at the same time. At least for the first 6 months. Read the Book "Dangerous Grains", be careful about adding in the gluten-free cookies, crackers etc, lot of cross contamination, plus you just might do well with grains. Better to heal some & then maybe try one thing at a time if you are wanting to.

I think you are going to feel much better gluten-free & Yes, you have to be completely gluten-free to feel better :)

Craftycat Newbie
Craftycat
Posted
  • Author
Welcome to the board Crafycat.

That side pain stuff is fairly common, it should completely go away once you are gluten-free, I also suggest you just go dairy free at the same time. At least for the first 6 months. Read the Book "Dangerous Grains", be careful about adding in the gluten-free cookies, crackers etc, lot of cross contamination, plus you just might do well with grains. Better to heal some & then maybe try one thing at a time if you are wanting to.

I think you are going to feel much better gluten-free & Yes, you have to be completely gluten-free to feel better :)

Thanks for the information and suggestions. I did wonder if anyone with Celiac had the pain in the right side. Someone else was telling me awhile back about the book "Dangerous Grains". I will take your advice a get a copy. I've been lactose intolerant and was off of dairy etc. for several years. Just added it back the last couple of years and seem to be able to tolerate a little now. I'm sure if the Celiac is positive I'll take the advice and get off dairy completely again. I've read enough about it lately and most suggest no dairy. I've used soy milk and rice milk for years. (Just read that my rice milk has some gluten in it. I checked the label after reading one of the other posts) do you know of any brands of Rice milk that is gluten free? Guess I can always make my own too.

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. Lkg5
      - Lkg5 replied to Charlie1946's topic in Related Issues & Disorders
      44

      Severe severe mouth pain

      My sebaceous hyperplasia and thrush disappeared when I stopped all dairy.
    2. Lkg5
      - Lkg5 commented on Scott Adams's article in Diagnosis, Testing & Treatment
      1

      Rapid Diagnosis of Celiac Disease Using Blood-Based Infrared Spectroscopy and Deep Learning

      Wow!!! 😂
    3. Charlie1946
      - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      44

      Severe severe mouth pain

      @knitty kitty Thank you so much for all that information! I will be sure to check it out and ask my doctor. I am just at a loss, I am on my 2nd round of miracle mouthwash and I brush and scrape my tongue and (sorry this is gross) it's still coated in the middle
    4. Aretaeus Cappadocia
      - Aretaeus Cappadocia posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      Traditional brown rice vinegars are made by fermenting brown rice and water with koji (Kōji 麹). The gluten risk comes from the method of preparing the koji: rice, wheat or barley may be used. Regardless of the starting grain, "koji" typically will be listed as an ingredient, and that term alone does not indicate gluten status. I called Eden Foods re...
    5. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Gluten-Free Recipes & Cooking Tips
      1

      heaps of hope!

      Your post nails the practical reality of living well with a celiac diagnosis. The shift from feeling restricted to discovering a new world of cooking—whether through a supportive partner making gluten-free spanakopita and gravy, or learning to cook for yourself—is exactly how many people find their footing. It turns a medical necessity into a chance to bui...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,095
    • Most Online (within 30 mins)
      7,748
    Will Smart
    Newest Member
    Will Smart
    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

    • Lkg5
      Severe severe mouth pain

      By Lkg5 · Posted

      My sebaceous hyperplasia and thrush disappeared when I stopped all dairy.
    • Charlie1946
      Severe severe mouth pain

      By Charlie1946 · Posted

      @knitty kitty Thank you so much for all that information! I will be sure to check it out and ask my doctor.  I am just at a loss, I am on my 2nd round of miracle mouthwash and I brush and scrape my tongue and (sorry this is gross) it's still coated in the middle 
    • Aretaeus Cappadocia
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Aretaeus Cappadocia · Posted

      Traditional brown rice vinegars are made by fermenting brown rice and water with koji (Kōji 麹). The gluten risk comes from the method of preparing the koji: rice, wheat or barley may be used. Regardless of the starting grain, "koji" typically will be listed as an ingredient, and that term alone does not indicate gluten status. I called Eden Foods regarding their product "Organic Brown Rice Vinegar" (product of Japan) to ask how their product is made. They gave me a clear answer that they >do< use rice and they >do not< use wheat or barley in preparing their koji. FWIW, the product itself does not contain any labeling about gluten, gluten risk, or gluten safety. Based on Eden's statement, I am going to trust that this product is gluten safe and use it.
    • Scott Adams
      heaps of hope!

      By Scott Adams · Posted

      Your post nails the practical reality of living well with a celiac diagnosis. The shift from feeling restricted to discovering a new world of cooking—whether through a supportive partner making gluten-free spanakopita and gravy, or learning to cook for yourself—is exactly how many people find their footing. It turns a medical necessity into a chance to build kitchen skills, eat more whole foods, and actually enjoy the process. Your point that the basics—knife skills, food safety, and experimenting with spices—are all you really need is solid, helpful advice. It’s a good reminder that the diagnosis, while a pain, doesn’t have to stop you from eating well or having fun with food.
    • Scott Adams
      Fruits & Veggies

      By Scott Adams · Posted

      You are experiencing a remarkable recovery by addressing core nutrient deficiencies, yet you've uncovered a deeper, lifelong intolerance to fruits and vegetables that appears to be a distinct issue from celiac disease. Your experience points strongly toward a separate condition, likely Oral Allergy Syndrome (OAS) or a non-IgE food intolerance, such as salicylate or histamine intolerance. The instant burning, heart palpitations, and anxiety you describe are classic systemic reactions to food chemicals, not typical celiac reactions. It makes perfect sense that your body rejected these foods from birth; the gagging was likely a neurological reflex to a perceived toxin. Now that your gut has healed, you're feeling the inflammatory response internally instead. The path forward involves targeted elimination: try cooking fruits and vegetables (which often breaks down the problematic proteins/chemicals), focus on low-histamine and low-salicylate options (e.g., peeled pears, zucchini), and consider working with an allergist or dietitian specializing in food chemical intolerances. 
×
×
  • 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.