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

Could It Be Something Else . . . ?


KLTerry

Recommended Posts

KLTerry Apprentice

I started having noticible stomach problems back in January of 2004. I'm not sure if they just occurred out of nowhere. I had been pregnant for two years (my kids are 2 1/2 and 17 months), so there were obviously changes in my body that I just blamed on pregnancy. Anyway, back in January '04, I talked to my PCP about stomach cramping. I couldn't really pinpoint it to any specific location, but it felt like all over. He told me to drink more water because I was constiputed. I told him that I had been constipated since 2002 and that no amount of water or any of the meds he prescribed me were doing anything. I then went to see a specialist who did bloodwork and scopes and ultrasound and scans, and most every test is normal (which I'm not complaining about). The celiac disease bloodwork was negative/normal/inconclusive, so I had a genetics test done, which came back inconclusive as well, so all tests were sent to a specialist, who said that he thinks I have celiac disease (I know I've told this story before). And this brings us back to my doctor's appointment at my new GI, where ALL of my tests came back normal. Now, I have been struggling with being gluten-free, and I've got to be honest, I'm not having much success, so I don't think that "trying" to be gluten-free would have produced normal blood results. So, my question is, if I don't have celiac disease, what the heck do I have? Are there any other diseases that are mistaken for celiac disease?


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



Celiac.com Sponsor (A8-M):



KaitiUSA Enthusiast

Which tests for celiac were inconclusive before? What exactly did they test you for with celiac? Were you on a gluten-free diet when the new tests came back normal from the other doctor? If you were attempting a gluten free diet leading up to that then it is possible it can screw up the test results. Is this new GI knowledgeable about celiac? The other one you had that thinks it was had to have a reason for thinking that and if he deals with celiac alot I wouldn't cross celiac off just like that especially since you had inconclusive results. Blood tests can be negative but you still could have celiac. That's why I asked which tests you were tested for becasue some are more accurate then others and only some labs do certain tests. The symptoms I have heard you talk about are ones that come with celiac. Have you been tested for other intolerances or allergies to other foods. Maybe you have a gluten intolerance if you don't have celiac. I would look into those things as well. Have you done an Enterolab? That might give you some insight as well. Good luck :D

-And celiac can be triggered by pregnancy,childbirth,stress, etc

Also you may want to check out about Candida.Other then being a celiac for a while I found out not to long ago I have candida and I am on Nystatin. Candida can cause some similar symptoms.

As far as it being hard to be gluten free....when I was told if I don't follow the diet I would probably end up with cancer at a young age that made me determined to follow the diet. I'm not about to compromise my life for a piece of pizza. It tears your intestines up and puts you at risk for so many serious and life threatening complications.

Just like if you had a serious allergy to peanuts you would stay away from them because you could die right. Well isn't a celiac and eating gluten the same concept? No, with celiac it won't kill you right away but the concept is the same and it still is serious.

KLTerry Apprentice

Most of my tests were negative, and I was only attempting a gluten-free diet when the blood tests all came back negative. In the summer, Two of three came back negative and one was inconclusive (not sure which one). An endoscopy revealed a hyatal hernia, colonoscopy revealed nothing but fissures and hemrhoids. The scan they did (not sure the name of scan, but was a big machine that came down over my stomach and i had to stay still for an hour) came back as normal, the ultrasound came back as normal, all of my regular bloodwork (i.e. glucose, thyroid, etc.) was normal. The only thing that was off was my vitamin D and my iron, but only slightly.

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. - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

    2. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

    3. - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

    4. - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

    5. - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      High TTG-IgG and Normal TTG-IgA

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,846
    • Most Online (within 30 mins)
      7,748

    Fultonn
    Newest Member
    Fultonn
    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

    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
×
×
  • 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.