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

I Guess This Is It?

gatita

Recommended Posts

gatita Enthusiast
gatita
Posted

Soooo.... my blood test came back negative but my doc (who is a nice version of Dr. House and never gives up) suspected gluten intolerance and put me on an elimination diet. After two weeks, my D was almost gone and joints were feeling better. Then I accidentally drank something made from wheat berries and had a big, bad reaction.

My doc thinks that's enough for him to diagnose "gluten intolerance" and says as long as I don't mind staying gluten-free, I should just continue with the diet and leave it at that.

I'm okay with being gluten-free forever as long as I keep feeling better.

He says if I really need to know more I could try eating another gluten food and see if I react again, but he doesn't recommend it and says it's not necessary.

My question is: Is there any important reason I should try to definitively confirm/rule out celiac?

Or should I just stay on the diet and leave it at that?

ps. Been lurking here for a couple weeks

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

Celiac.com Sponsor (A8-M):


beachbirdie Contributor
beachbirdie
Posted

Soooo.... my blood test came back negative but my doc (who is a nice version of Dr. House and never gives up) suspected gluten intolerance and put me on an elimination diet. After two weeks, my D was almost gone and joints were feeling better. Then I accidentally drank something made from wheat berries and had a big, bad reaction.

My doc thinks that's enough for him to diagnose "gluten intolerance" and says as long as I don't mind staying gluten-free, I should just continue with the diet and leave it at that.

I'm okay with being gluten-free forever as long as I keep feeling better.

He says if I really need to know more I could try eating another gluten food and see if I react again, but he doesn't recommend it and says it's not necessary.

My question is: Is there any important reason I should try to definitively confirm/rule out celiac?

Or should I just stay on the diet and leave it at that?

ps. Been lurking here for a couple weeks — great forum! Y'all are so helpful :)

At this point, if you can commit to staying gluten free, there wouldn't necessarily be a point to undergo gluten challenges and testing.

On the other hand, if you still have symptoms, you would want to pursue that just to make sure you don't have something else. Also, if there are special needs such as dining plans in college (or assisted living, for that matter, LOL) you do need a doctor to give a firm diagnosis so they can send a letter to the institution. So, it really depends on your personal circumstances.

Sounds like you are better without gluten, and for many that is enough of an answer!

Welcome to the forum, by the way!

lovegrov Collaborator
lovegrov
Posted

If both your doctor and you become convinced that gluten was indeed the problem, I don't see a reason for anything else.

richard

GottaSki Mentor
GottaSki
Posted

Welcome!

Happy to hear you have a great doctor - not enough doctors understand the havoc gluten can play in the body.

Since you are improving and ready to stay gluten-free, I'd say there is no need for further testing. It can be very tough to go back on gluten for testing as it is recommended that you eat substantial amounts for at least three months. Even then the testing can be negative, which would be extremely frustrating not to mention potentially harmful.

gatita Enthusiast
gatita
Posted
  • Author

Thanks for the welcome and all your insight.

I can probably get a letter from my doc saying "severe gluten intolerance"... for the nursing home or jail or whatever LOL...

Yes, my doc is a good one!

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,776
    • Most Online (within 30 mins)
      7,748
    peskywabbit
    Newest Member
    peskywabbit
    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

    • Colleen H
      Celiac attack confusion and anxiety

      By Colleen H · Posted

      Hi all ! Can a celiac attack be so intense that it causes your entire body to work in reverse? Meaning really bad pain,  neuropathy and muscle,  jaw pain,  the stomach issues , Horrible anxiety and confusion??  I had a Tums and you would think I ate poison. My jaw and stomach did not like it . Not the norm for me. Things that are simple are just out of control. Anyone ever have this happen??  I'm trying to figure out what I ate or did to bring on a celiac like attack. I had an idea before but yesterday I didn't have any gluten unless it was in a medication ?! Any positive suggestions ??  Thank you 
    • Scott Adams
      Gluten free stuff

      By Scott Adams · Posted

      The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.      
    • trents
      Gluten free stuff

      By trents · Posted

      Tammy, in the food industry, "gluten free" doesn't mean the same thing as "no gluten". As Scott explained, the FDA (Food and Drug Administration) allows food companies to use the "gluten-free" label as long as the product does not contain more than 20 ppm (parts per million) of gluten. This number is based on studies the FDA did years ago to determine the reaction threshold for those with celiac disease. And the 20 ppm figure works for the majority of celiacs. There are those who are more sensitive, however, who still react to that amount. There is another, stricter standard known as "Certified Gluten Free" which was developed by a third party organization known as GFCO which requires not more than 10 ppm of gluten. So, when you see "GFCO" or "Certified Gluten Free" labels on food items you know they are manufactured with a stricter standard concerning gluten content. Having said all that, even though you may read the disclaimer on a food item that says the spices may contain wheat, barley or rye (the gluten grains), you should be able to trust that the amount of gluten the spices may contain is so small it allows the total product to meet the requirements of gluten free or certified gluten free labeling. I hope this helps.
    • Tammy Pedler
      Gluten free stuff

      By Tammy Pedler · Posted

      As soon as I see gluten free I read the labels. I always find stuff that I cannot have on the products them selfs. Like spices, when the labels says  everything listed and then after like say garlic salt then the next thing is spices. When it says that that can contain wheat and other things I can’t have.. 
    • Scott Adams
      Do some people with Celiacs develop hypoglycemia?

      By Scott Adams · Posted

      While hypoglycemia isn't a direct, classic symptom of celiac disease, it's something that some individuals with well-managed celiac disease report, and there may be a few plausible explanations for why the two could be connected. The most common theory involves continued damage to the gut lining or nutrient deficiencies (like chromium or magnesium) that can impair the body's ability to regulate blood sugar effectively, even after gluten is removed. Another possibility is delayed stomach emptying (gastroparesis) or issues with the hormones that manage blood sugar release, like glucagon. Since your doctors are puzzled, it may be worth discussing these specific mechanisms with a gastroenterologist or endocrinologist. You are certainly not alone in experiencing this puzzling complication, and it highlights how celiac disease can have long-term metabolic effects beyond the digestive tract.
×
×
  • 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.