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

Am I Celiac or intolerence


Smaug

Recommended Posts

Smaug Newbie

Help! Am i Celiac or gluten intolerant? Is the blood test accurate?

Did not know until last week exactly what Celiac & Gluten is until my doctor said he suspected i was suffering from Celiac. However following tests last week for this they have apparently come back as negative, which i really don't understand because it would account for all of symptoms i have detailed below. My doctor has advised that this is not conclusive & the only true way is by means of a small intestine biopsy of the Villi and has refered me to the hospital. Snag is that this appointment could take up to 3 months, also after trying "Gluten free diet" for one week most if not all of my symptoms have reduced or been eliminated and thats just seven days. Is the blood test accurate?

With understanding that if the Villi are damaged by this autoimmune reaction to Gluten (Protein) it causes reduced ability to absorb vitiams, nutrients & i suspect water too, which causes havoc with the entire body.

I Have been suffering for 10 years or more with related symptoms. First started with lactose intolerance approx 12 years ago. For the last two years I have gradually experienced greater symtoms such as: weekly headaches & migraines, severe bloating & cramps of stomach, frequent diarrhoea, excessive belching of gas and bad smelling wind, toilet visits smelly, fatty & oily fat on surface of water, Asthma when exercising (never used to suffer from this until last couple of years), brain fog (reduced brain size from CT scan), poor hydration problems with thirst can not quench, frequent muscle cramps especially when exercising (swimming), poor gums, insomnia, dry eyes.........

Other common possible causes have been eliminated by means of blood tests, stool tests, urine & ultrasound. Understanding from research that all of these symptoms can be associated to Celiac, they have now all been reduced or eliminated after just seven days of Gluten free diet, surely this must been Celiac? is the blood test not accurate?

 


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

The blood test for celiac disease is not perfect, but it does have a good track record.  So, experts recommend both a celiac blood panel and biopsies (4 to 6 tissue samples) taken via endoscopy.  What blood tests did you have?  The most common screening test (cheap and effective)  is the TTG Iga and the doctor usually orders an IgA deficiency test to confirm that the TTG IgA test is valid.  But many celiac patients (like me!) test negative on the screening TTG IgA test.  The best thing is to get your doctor to order the entire panel:

  • TTG IgA and TTG IgG
  • DGP Iga and DGP IgG
  • EMA
  • IGA and IGG deficiency tests

Finally, an endoscopy is ordered to confirm and evaluate intestinal damage (4 to 6 biopsies).

I would recommend getting copies of your celiac tests.  I know you went gluten free already (one week) but you do have to be consuming gluten daily for the celiac disease tests to be accurate (8 to 12 weeks for blood tests and 2 to 4 weeks for the endoscopy).  You can check with your GI for appointment cancellations to help speed things up.  

Don't take my word from it -- see what the experts recommend:  

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

The endoscopy can catch other things that may be a contributing factor to your symptoms and it establishes a baseline too.  

Good luck!  

 

 

Aubrey24 Newbie

Why not just go ahead and try gluten free that's the symptoms I had and my biopsy came back normal but my stomach was inflamed and I was beyond sick two days gluten free and I felt a major difference! I went to ER seven times in a year with my stomach pains being so intense and now I'm bett r and anytime I eat gluten by accident or cross contamination I feel it within thirty mins. Doctors said they believed it was celiac disease but test came back normal but obviously they aren't 100 percent accurate as I definitely have it.

Smaug Newbie

Thanks both for your replies, very helpful, especially links. At the time of blood tests I was on a normal diet containing gluten. Will have to go back to doctor to obtain test results. Should I ask him to re test is simple test only done?

Don't know if I could ever now go back on a gluten containing diet for the purposes of the biopsy test with how I'll it has made me, especially now beginning to feel significant benefits. Biopsy test date not yet confirmed, have only just been referred to hospital by doctor. Guess there will be a initial consultation before procedure planned. However the NHS in the uk is good.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,187
    • Most Online (within 30 mins)
      7,748

    Kris46
    Newest Member
    Kris46
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Ginger38
      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...