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

Testing Questions


wacky~jackie

Recommended Posts

wacky~jackie Rookie

Hi all! First I just want you to know that I have found this message board very informative.

Here's a short bio. Older sister diagnosed by positive blood tests and positive biopsy. She recommended that I be tested as I have many symptoms (bloating, joint pain, thyroid, depression, gall bladder, headaches - just to name a few!!). After much research I decided to ask my doctor to do blood tests. She really listened to what I had researched and my symptoms and ordered blood tests. After waiting almost 2 weeks for the results (which I didn't expect such a long wait.) they came back negative (IGG of 4 and IGA of 5, iron ok, B12 ok) but she only did those four tests.

My question is should I have her do further testing based on some of the posts I have read? Should I keep the appointment that I have scheduled with a GI and request a biopsy? Or do I just go gluten-free?

In the past I was on the Atkins diet and felt 100% better - which I now believe is because my gluten consumptions was definitely dramatically reduced (although probably not 100% gluten free). I'm ready to cut-out gluten completely to feel better but I don't want to do a gluten challenge for more tests so I just keep eating like I always have. I feel like I'm in limbo!!

Any suggestions?


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



Celiac.com Sponsor (A8-M):



plantime Contributor

It is your choice what to do next. Your bloodwork was negative, but that could mean that there just is not enough damage to show up. You can still get the biopsy if you want to. You say you felt better on the Atkins diet, so I recommend you try the gluten-free diet for 6 weeks. A doctor's diagnosis is not needed to eat gluten-free, so if you feel better on a gluten-free diet, there is no reason why you can't remain on it. The dietary response is a test in and of itself.

AndreaB Contributor

If you can swing the money I would recommend Enterolab. They can catch the intolerance before it hits the blood as they test stool. Open Original Shared Link for more info.

mle-ii Explorer

I too noticed how much my symptoms improved when doing Atkins, I didn't make the link to gluten until I found out I had Lymphocytic Colitis and found that others with my disease had improvement with going gluten free. I had Enterolab test me and found that I had gluten sensitivity as well as the genes.

wacky~jackie Rookie
I too noticed how much my symptoms improved when doing Atkins, I didn't make the link to gluten until I found out I had Lymphocytic Colitis and found that others with my disease had improvement with going gluten free. I had Enterolab test me and found that I had gluten sensitivity as well as the genes.

It was amazing. I only ate when I was hungry. No more cravings. I had no bloating and my knees and back felt 100% better. I ended up going off it after some complications from my gall bladder removal and the hospital put me on a clear liquid diet (all sugar!!! which is a major no-no on Atkins) I tried to go back on it when I started gaining the weight back but I haven't had much success because it's too strict. At least on a gluten-free diet I can try corn, potatoes and rice and I can have fruit - none of that is allowed on Atkins. So I think I'll be able to stick to gluten-free pretty easily, especially if I feel better. I guess I was hoping for a definite positive diagnosis. I figured that I could stay away from the bread and stuff easier if I knew it would damage my intestine. I'm worried that I'll be more apt to cheat without the diagnosis. :(

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,742
    • Most Online (within 30 mins)
      7,748

    MistyMoon
    Newest Member
    MistyMoon
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Theresa2407
      Maybe you have a low  intolerance to Wheat.   Rye, Barley and Malt are the gluten in Celiac disease.  It has always been stated Wheat and Gluten, not just a Wheat intolerance.  Barley will keep me in bed for (2) weeks.  Gut, Migrains, Brain fog, Diahrea.  It is miserable.  And when I was a toddler the doctor would give me a malt medicine because I always had Anemia and did not grow.  Boy was he off.  But at that time the US didn't know anyone about Celiac.  This was the 1940s and 50s.  I had my first episode at 9 months and did not get a diagnosis until I was 50.  My immune system was so shot before being diagnoised, so now I live with the consequences of it. I was so upset when Manufacturers didn't want to label their products so they added barley to the product.  It was mostly the cereal industry.  3 of my favorite cereals were excluded because of this. Malt gives me a bad Gut reaction.
    • Gigi2025
      Thanks much Scott.  Well said, and heeded.   I don't have Celiac, which is fortunate.
    • Scott Adams
      Do you have the results of your endoscopy? Did you do a celiac disease blood panel before that?  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      It is odd that your Tissue Transglutaminase (TTG) IgA level has bounced from the "inconclusive" range (7.9, 9.8) down to a negative level (5.3), only to climb back up near the positive threshold. This inconsistency, coupled with your ongoing symptoms of malabsorption and specific nutrient deficiencies, is a strong clinical indicator that warrants a more thorough investigation than a simple "satisfactory" sign-off. A negative blood test does not definitively rule out celiac disease, especially with such variable numbers and a classic symptomatic picture. You are absolutely right to seek a second opinion and push for a referral to a gastroenterologist. A biopsy remains the gold standard for a reason, and advocating for one is the most direct path to getting the answers you need to finally address the root cause of your suffering. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      There is a distinction between gluten itself and the other chemicals and processing methods involved in modern food production. Your experience in Italy and Greece, contrasted with your reactions in the U.S., provides powerful anecdotal evidence that the problem, for some people, may not be the wheat, but the additives like potassium bromate and the industrial processing it undergoes here. The point about bromines displacing iodine and disrupting thyroid function is a significant one, explaining a potential biological mechanism for why such additives could cause systemic health issues that mimic gluten sensitivity. It's both alarming and insightful to consider that the very "watchdog" agencies meant to protect us are allowing practices banned in many other developed countries. Seeking out European flour and your caution about the high-carb, potentially diabeticgenic nature of many gluten-free products are excellent practical takeaways from your research, but I just want to mention--if you have celiac disease you need to avoid all wheat, including all wheat and gluten in Europe.
×
×
  • 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.