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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,116
    • Most Online (within 30 mins)
      7,748
    Mary Pack
    Newest Member
    Mary Pack
    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

    • trents
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By trents · Posted

      I assume that you already know that genetic testing for celiac disease cannot be used to confirm a celiac diagnosis. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. It can be used to rule out celiac disease with a high degree of confidence, however, in the case where the genetic testing is negative for the genes. Until and unless you are actually diagnosed with celiac disease I would not raise this as an issue with family. However, if you are diagnosed with celiac disease through blood antibody testing and/or endoscopy with positive biopsy I would suggest you encourage first degree relatives to also purse testing because there is a significant chance (somewhere betwee 10% and almost 50%, depending on which studies you reference) that they will also have or will develop active celiac disease. Often, there are symptoms are absent or very minor until damage to the small bowel lining or other body systems becomes significant so be prepared that they may blow you off. We call this "silent celiac disease". 
    • trents
      GI DX celiac despite neg serology and no biopsy

      By trents · Posted

      If you were off gluten for two months that would have been long enough to invalidate the celiac blood antibody testing. Many people make the same mistake. They experiment with the gluten free diet before seeking formal testing. Once you remove gluten from the diet the antibodies stop being produced and those that are already in circulation begin to be removed and often drop below detectable levels. To pursue valid testing for celiac disease you would need to resume gluten consumption equivalent to the amount found in 4-6 slices of wheat bread daily for at least two weeks, preferably longer. These are the most recent guidelines for the "gluten challenge". Without formal testing there is no way to distinguish between celiac disease and gluten sensitivity since their symptoms overlap. However, celiac disease is an autoimmune disorder that damages the small bowel lining, not true of gluten sensitivity. There is no test available for gluten sensitivity so celiac disease must first be ruled out. By the way, elevated liver enzymes was what led to my celiac diagnosis almost 25 years ago.
    • trents
      High DGP-A with normal IGA

      By trents · Posted

      Then it does not seem to me that a gluten-related disorder is at the heart of your problems, unless that is, you have refractory celiac disease. But you did not answer my question about how long you had been eating gluten free before you had the blood antibody test for celiac disease done.
    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      My genetic test results have arrived - I’m homozygous for DQB1*02, meaning I have HLA-DQ2. I’ve read that this is one of the genes most strongly associated with celiac disease, and my symptoms are very clear. I’m relieved that the results finally arrived, as I was getting quite worried since my symptoms have been getting worse. Next step, blood test. What do these results imply? What should I tell my family? I’m concerned that this genetic predisposition might also affect other family members.
    • Roses8721
      GI DX celiac despite neg serology and no biopsy

      By Roses8721 · Posted

      Two months. In extreme situations like this where it’s clearly a smoking gun? I’m in LA so went to a very big hospital for pcp and gi and nutritionist 
×
×
  • 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.