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

"You're a non-traditional case" Doc said. What?? Help Please!


Jesikita07

Recommended Posts

Jesikita07 Newbie

I know there are thousands of these topics out there, but I'm yet another confused and in pain patient seeking as much help and guidance as I can get from you kind folk. 

My storyline is this (and I'll bullet point for ease)

- 2012 living abroad in Nicaragua for last 5 years- begin feeling stomach pain, gas, severe diarrhea. Foods like broccoli, spinach, coffee, are major irritants. 

- 2013 - Immigrate back to US - symptoms continue but increase in frequency

- 2014 - crappy health insurance and can't get tested

- 2015 April - Initial blood test = Celiac panel- my value 98 (std rng 0-19), TTG IGA- my value 74 (std rng 0-19), Gliadin Antibodies IGA - my value 9 (std rng 0-19)

- 2015 Sept - Endoscopy - negative villi atrophy, Colonoscopy - without abnormality

- 2015 Oct - Begin gluten free diet, 98% faithful. Diarrhea seems to lessen. Feeling of increased energy. 

- 2015 Nov - Additional blood work and parasite tests ; Cryptoporidium and Giardia Antigens : Negative, TTG Ab IgA = 26 (std range = <20), Gliadin Deamidated IgG Ab = 29 (std range = <20)

- 2015 Nov-Dec - attempt eating a whole wheat italian coldcut wrap for lunch to test theory. Immediate pain in stomach, and symptoms for 3 weeks. 

 

So my questions are these: 

How important is the diagnosis?

Do these sound like celiac elements or simply gluten sensitivity or neither?

How can the TTG have been so high without villi atrophy? 

Is there something else I should test for or seek out? 


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



Celiac.com Sponsor (A8-M):



celiac sharon Apprentice
10 hours ago, Jesikita07 said:

I know there are thousands of these topics out there, but I'm yet another confused and in pain patient seeking as much help and guidance as I can get from you kind folk. 

My storyline is this (and I'll bullet point for ease)

- 2012 living abroad in Nicaragua for last 5 years- begin feeling stomach pain, gas, severe diarrhea. Foods like broccoli, spinach, coffee, are major irritants. 

- 2013 - Immigrate back to US - symptoms continue but increase in frequency

- 2014 - crappy health insurance and can't get tested

- 2015 April - Initial blood test = Celiac panel- my value 98 (std rng 0-19), TTG IGA- my value 74 (std rng 0-19), Gliadin Antibodies IGA - my value 9 (std rng 0-19)

- 2015 Sept - Endoscopy - negative villi atrophy, Colonoscopy - without abnormality

- 2015 Oct - Begin gluten free diet, 98% faithful. Diarrhea seems to lessen. Feeling of increased energy. 

- 2015 Nov - Additional blood work and parasite tests ; Cryptoporidium and Giardia Antigens : Negative, TTG Ab IgA = 26 (std range = <20), Gliadin Deamidated IgG Ab = 29 (std range = <20)

- 2015 Nov-Dec - attempt eating a whole wheat italian coldcut wrap for lunch to test theory. Immediate pain in stomach, and symptoms for 3 weeks. 

 

So my questions are these: 

How important is the diagnosis?

Do these sound like celiac elements or simply gluten sensitivity or neither?

How can the TTG have been so high without villi atrophy? 

Is there something else I should test for or seek out? 

The damage to the villi could have been patchy and if they didn't take enough random samples the May have missed it. 

bartfull Rising Star

You have celiac. The small intestine, if spread out, is the size of a football field. Of course they missed the damage, but with numbers that high on your blood work, I'm sure it is there.

That means being 98% compliant in the diet is not good enough. You need to be 100%, or as close as is humanly possible. Go on over to the coping section and read the Newbie 101 thread pinned to the top to learn how.

squirmingitch Veteran
1 hour ago, bartfull said:

You have celiac. The small intestine, if spread out, is the size of a football field. Of course they missed the damage, but with numbers that high on your blood work, I'm sure it is there.

That means being 98% compliant in the diet is not good enough. You need to be 100%, or as close as is humanly possible. Go on over to the coping section and read the Newbie 101 thread pinned to the top to learn how.

DITTO THIS!!!!!!!

Palvyre Apprentice

With those blood results and if a gluten-free diet helps you very likely have Celiac. My biopsy was also negative, but had strong positive numbers on all of the celiac disease blood tests. I also had a high risk positive genetic profile. Follow up testing revealed vitamin deficiencies and osteoporosis. If you are still concerned you may not have a diagnosis, I'd get the genetic test. 

Palvyre Apprentice

I would add that I am now over a year into my gluten-free diet and my daily diahrea and stomach pain are gone. 

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. - Wheatwacked replied to Midwesteaglesfan's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Going for upper endoscopy today

    2. - Midwesteaglesfan posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Going for upper endoscopy today

    3. - marlene333 replied to Grace Good's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Bee balm lipbalm not gluten free

    4. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      4

      Related issues


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,267
    • Most Online (within 30 mins)
      7,748

    Kristine Ryder
    Newest Member
    Kristine Ryder
    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

    • Wheatwacked
      Hello @Midwesteaglesfan and welcome. A result greater than 10 U/mL is considered positive. Some labs use 15 as the cutoff, but 34 is in the positive.  The endoscopy and biopsy is looking for damage to your small intestine.  I don't don't think 5 days is enough to repair the damage. This comment is effectly your answer, regardless of your biopsy results.  The endoscopy has been the Gold Standard diagnostic, and most healthcare providers won't diagnose celiac disease until your intestinal lining Marsh Score reaches stage 3. You don't really want to wait for the damage to get worse, especially since only five days mostly gluten free gave you relief.  Yes, migranes is one of the 200 symptoms that may be caused by Celiac Disease. Malabsorption Syndrome is often comorbid with celiac disease.  The western diet is deficient in many vitamins and minerals.  That's why gluten processed foods are fortified.  Gluten free processed foods are not; Vitamin D deficiency is a virtual given.  40 to 60% of the industrial population is deficient in vitamin D, Damage to the intestinal lining from celiac disease can decrease the number of vitamin D receptors.  So now you get no vitamin D from the sun (skin cancer scare) the major source of vitamin D, plus absorbtion from food is poor because of intestinal damage.   Low iodine intake is getting more of a concern because the major source of iodine used to be bread (dough conditioner with iodine was stopped in the US in the 1970s), dairy (lactose intolerance from eating quick pickles with vinegar instead of fermented pickles which supply lactase excreting lactobacillus to improve Lactose intolerance. Commercial Dairies have wheat, barley and rye added to the cow feed. Some say they are sensitive to milk protein, but it is the gluten added to supplement the cow feed to increase milk production that becomes part of the milk protein causing the problem.  And people use less iodized salt.  In the US intake of iodine dropped 50% from 1970 to 1984. Switch to Grass fed only milk and consider supplementing Liquid Iodine drops to your diet.  The omega 6 to omega 3 ratio of commercial milk is 5:1; Organic milk is 3:1 and grass fed milk is 1:1. The typical western diet is around 14:1, optimum for humans is 1:1.  Wheat flour is 22:1 omega 6:3.  Choose vegetables lower in omega 6, it is inflammatory. Eat fermented foods and switch to Grass fed only milk.  Some say they are sensitive to milk protein, but it is the gluten added to supplement the cow feed to increase milk production that becomes part of the milk protein.   
    • Midwesteaglesfan
      At 41 years old I have been fighting fatigue and joint pain for a couple months.  My family doctor kept saying nothing was wrong but I was insistent that I just didn’t feel right.  Finally after running several blood labs, one came back showing inflammation in my body and I was referred to a rheumatologist.  He was extremely thorough and sat with me and my family for a good hour asking questions and listening. He ordered X-rays of all my joints and more bloodwork.  He suspected some sort of reactive inflammatory arthritis.  My TTG (Tissue Transglutaminase) came back at 34. he told me to try going gluten free and out me on Salfasalzin to help the join inflammation.  Over the next couple days going gluten free and doing a lot of research and talking to people with celiacs,  we found that I should have an upper endoscopy for insurance purposes in the future.  I reached back out to my rheumatologist and expressed this concern and he got back to me stating I was correct and resume regular gluten diet and stop the medication until after that scope.     They were able to schedule me in for 2 days later.  I had been gluten free, or as close to it as I could be for about 5 days.  I know I ate some brats with it but wanted to use them up.  My symptoms had gotten slightly better in those 5 days.  I felt less fatigue and joint pain was slightly better(it had gotten really bad) so for these last 2 days I’ve gone crazy with wheat bread, pasta and such.  I’m hoping those 5 days didn’t screw this endoscopy up.  I can’t imagine after a life of gluten, my intestines healed in 5 days and after eating gluten again for these couple days,  my stomach hurts, joint pain is coming back up so I know the inflammation is there.   Hinesight after this diagnosis, I have had chronic migraines since my late teens.  Has that been a lingering symptom of celiacs all these years?  I’ve never really had the stomach issues, for me it came in heavy these last couple months as the fatigue, just always feeling tired and exhausted.  And the joint pain.     So getting in the car for the 2 hour drive to the hospital for this scope now.     Wish me luck!
    • marlene333
      To play it safe, use Vasoline Lip Therapy. No questions as to it containing gluten.
    • Mari
      jmartes, Thank you for sharing  more information with us. Most of us Celiacs whose problems do not clear up with in a few years have to decide what to do next. We can keep seeing DR.s and hope that we will get some  medication or advice that will improve our health. Or we can go looking for other ways to improve our health. Usually Celiac Disease is not a killer disease, it is a disabling disease as  you have found out. You have time to find some ways to help you recover. Stay on your gluten-free diet and be more careful in avoiding cross contamination . KnittyKitty  and others here can give you advice about avoiding some foods that can give you the gluten auto immune reaction and advice about vitamins and supplement that help celiacs. You may need to take higher doses of Vit. B12  and D3.  About 20 years before a Dr. suggested I might have Celiac disease I had health problems that all other Dr said they could not identify or treat. I was very opposed to alternative providers and treatments. So many people were getting help from a local healer I decided to try that out. It was a little helpful but then, because I had a good education in medical laboraties she gave me a book  to read and what did I think. With great skeptism I started reading and before I was half way through it I began using the methods outlined in the book. Using those herbs and supplements I went from hardly able to work to being able to work almost fulltime. I still use that program. But because I had undiagnosed celiac disease by 10 years later some  of my problems returned and I started to loose weight.    So how does a person find a program that will benefit them? Among the programs you can find online there are many that are snake oil scams and some that will be beneficial. by asking around, as I did. Is there an ND in your area? Do they reccomend that person? If you would like to read about the program I use go to www.drclark.net   
    • Scott Adams
      It's unfortunate that they won't work with you on this, but in the end sometimes we have to take charge of our own health--which is exactly what happened to me. I did finally get the tests done, but only after years of going down various rabbit holes and suffering. Just quitting gluten may be the best path for you at this point.
×
×
  • 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.