Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

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

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
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

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
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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,247
    • Most Online (within 30 mins)
      7,748

    Jbamf8791
    Newest Member
    Jbamf8791
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Zuma888
    • knitty kitty
      You have one gene for Celiac.  You have a second autoimmune disease, Hashimoto's thyroiditis, which is frequently found at a higher rate with Celiac.  HLA genes carry autoimmune disease genes like Celiac and Hashimoto's and diabetes and others.   You have Celiac symptoms of reacting after gluten.  You said "I am however still suffering from the effects of the gluten challenge (food sensitivities, slight brain fog, weird stool, fatigue, swollen thyroid, bodyaches)."  And your anti-thyroid antibodies increase after gluten exposure.  While tTg IgA does not directly attack the thyroid, gluten exposure does trigger the  immune system to produce antibodies against the thyroid in genetically predisposed individuals.  You did not eat sufficient gluten (10 grams of gluten per day for two weeks minimum) to raise the autoimmune antibodies to the point they can be measured in the blood, so your blood tests may well be inaccurate.  You could choose to continue the gluten challenge of 10 grams a day for at least two weeks and get retested.   At the very least, you know that gluten is harmful to your thyroid, and because you are genetically predisposed to Celiac disease, a strict gluten free diet would be beneficial for your overall health.  
    • Zuma888
      Thanks @Scott Adams! I guess my question now is: do the celiacs who can get away with regular contamination without villi damage as you mentioned have to be strict about cross-contamination ? 
    • Zuma888
      Thank you very much @knitty kitty! I'm glad you brought up the point about histamine. I have been taking an antihistamine after meals where I don't feel so good and never knew why it helped so much. At first I thought I might have a food allergy, but I recently did a food allergy test and I actually have ZERO food allergies. Regarding your last point about the stages of grief, are you saying it's likely that I have celiac? I have Hashimoto's BTW and I know for sure that gluten causes an autoimmune response to my thyroid as my anti-TPO and anti-Tg go up and my throat feels swollen. Could the symptoms be due to that autoimmune response?
    • knitty kitty
      @Zuma888, The antibodies produced in response to gluten are made in the intestines.  When the body is provoked sufficiently, the antibodies overflow out of the intestines and into the blood stream.  Once in the blood stream, the antibodies can be measured with tTg IgA tests.  Three grams of gluten per day for two weeks minimum is enough gluten to make you feel the symptoms of having been glutened, but the antibodies are not in sufficient quantity to be measured in the blood. Ten grams of gluten per day for a minimum of two weeks is required to get the anti gluten antibodies at a high enough level in the blood stream to be measured by tTg IgA tests. So, no, occasional cross contamination or (heaven forbid) intentional cheat days will not be sufficient for tTg IgA testing.  You will still be making antibodies which will still be causing inflammation and damage to the intestines and body.  Histamine is released as part of the immune response to gluten.  High histamine levels lead to food sensitivities, brain fog, and body aches.   The damage done to the gastrointestinal tract affects the absorption of essential vitamins and minerals.  Malabsorption of fats can cause changes in stools.  Insufficient absorption of vitamins and minerals can cause damage to other organs like the thyroid if it can't get enough Selenium, iodine, iron, zinc, and Thiamine.  Brain fog and fatigue can be caused by low Thiamine and other B Complex vitamins.  Vitamin D is needed to regulate the immune system.  One gene is all that's needed to develop Celiac disease.  I know a Celiac diagnosis is a change that can be difficult to get your head around.  Many people go through the five stages of grief.  One stage is "bargaining".  Sounds like you're stuck there.  Every little cheat counts to your detriment.  But sticking to a gluten free diet, makes every meal a success.   Read the comments below the article... Best wishes!  Keep us posted on your progress!
×
×
  • Create New...