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

When you decide to eat gluten anyway

larann78

By larann78
in Coping with Celiac Disease

Recommended Posts

larann78 Rookie
larann78
Posted

I was tested for celiac after already being gluten free for 2 months. My levels came back totally normal. So, I went back to eating gluten. The awfulness kicked right back in. The brain fog...the massive bloating...the watery diarrhea...the headaches...the blisters on my hands...the rashes, blah blah blah. So, I stopped eating gluten again. Life was good. Then last night I got PISSED. Pissed that a test came back negative, yet I'm watching my family eat christmas cookies and pizza and I'm not partaking. So, I decided to eat ALL the glutenous things. The cookies. Yep. The pizza. Yep. A toaster strudel. Yep. And today I'm in a crazy amount of pain and look 6 months pregnant. I'm SO frustrated that my test was so clearly negative, yet the symptoms are so wild when I consume. When people ask me if I'm celiac, I tell them no...because according to the test, it's the truth. Then the long explanation begins of WHY I still shouldn't/can't eat it. Anyone else ever feel this way?

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted
7 minutes ago, larann78 said:

I was tested for celiac after already being gluten free for 2 months. My levels came back totally normal. So, I went back to eating gluten. The awfulness kicked right back in. The brain fog...the massive bloating...the watery diarrhea...the headaches...the blisters on my hands...the rashes, blah blah blah. So, I stopped eating gluten again. Life was good. Then last night I got PISSED. Pissed that a test came back negative, yet I'm watching my family eat christmas cookies and pizza and I'm not partaking. So, I decided to eat ALL the glutenous things. The cookies. Yep. The pizza. Yep. A toaster strudel. Yep. And today I'm in a crazy amount of pain and look 6 months pregnant. I'm SO frustrated that my test was so clearly negative, yet the symptoms are so wild when I consume. When people ask me if I'm celiac, I tell them no...because according to the test, it's the truth. Then the long explanation begins of WHY I still shouldn't/can't eat it. Anyone else ever feel this way?

Sorry, but your doctor should have known that ALL celiac disease testing requires you to be on a daily diet of gluten.  

Learn more:

http://www.cureceliacdisease.org/screening/

https://www.mayoclinic.org/diseases-conditions/celiac-disease/diagnosis-treatment/drc-20352225

You could consider a gluten challenge which would require you to consume gluten for 6 to 12 weeks.  

https://www.beyondceliac.org/celiac-disease/Testing-and-Diagnosis/The-Gluten-Challenge/1510/

 

kareng Grand Master
kareng
Posted
16 hours ago, larann78 said:

I was tested for celiac after already being gluten free for 2 months. My levels came back totally normal. So, I went back to eating gluten. The awfulness kicked right back in. The brain fog...the massive bloating...the watery diarrhea...the headaches...the blisters on my hands...the rashes, blah blah blah. So, I stopped eating gluten again. Life was good. Then last night I got PISSED. Pissed that a test came back negative, yet I'm watching my family eat christmas cookies and pizza and I'm not partaking. So, I decided to eat ALL the glutenous things. The cookies. Yep. The pizza. Yep. A toaster strudel. Yep. And today I'm in a crazy amount of pain and look 6 months pregnant. I'm SO frustrated that my test was so clearly negative, yet the symptoms are so wild when I consume. When people ask me if I'm celiac, I tell them no...because according to the test, it's the truth. Then the long explanation begins of WHY I still shouldn't/can't eat it. Anyone else ever feel this way?

That test meant nothing.  It wasn't done properly.  You must be eating gluten to be tested for Celiac.  When you have Celiac and are on a gluten-free diet, you want the tests to be negative.  I

You could go back to eating gluten for a few months and get re-tested.  

 

weebl Apprentice
weebl
Posted

Also, be aware that you could have gluten in your diet for the required length of time, at it could still come back negative. From your perspective, that should mean nothing. Unfortunately, from the perspective of many in the medical community, that means to them you do not have Celiac, and they stop there.

You know your body best. You need to be your own advocate.

You mentioned rashes reappeared. I am assuming that means you have dermatitis herpetiformis (DH), which is a variant of Celiac disease that attacks the skin. It is extremely rare, and even less understood by the medical community.

BUT, that means you have another test option. You need to have what is called a "punch biopsy," and should best be performed by someone familiar with DH. DH sufferers apparently have a higher chance that blood tests will come back negative, but a very high chance that the biopsies will show as positive, but they must be done correctly. The sample is taken from the adjacent skin, not the affected skin.

Squirmingitch shared these links with me. Don't hesitate to print them off and bring them to your doctor, but don't take a confrontational approach. Instead, say something along the lines of, "so I was reading this... I think I match the symptoms... this is what it says should be done... what are your thoughts?" This gives your doctor a face saving way to say yes, I think you are right, and let's do this, provided of course they are on board with it. And if they aren't, time to move on to another doc, or simply live with the fact that you don't have it officially diagnosed.

https://celiac.org/about-celiac-disease/related-conditions/dermatitis-herpetiformis/

http://www.cureceliacdisease.org/faq/can-a-skin-biopsy-for-dermatitis-herpetiformis-dh-confirm-celiac-disease-or-is-an-endoscopy-still-needed/

Archived

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

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


  • Member Statistics

    • Total Members
      127,759
    • Most Online (within 30 mins)
      7,748
    Audrey56
    Newest Member
    Audrey56
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Bebee
      Testing for celiac

      By Bebee · Posted

      I am new here, I have been diagnosed with Microscopic Colitis (Lymphatic) years ago and have been gluten-free, DF since, but I still can have occasional bouts of diarrhea (still trying to figure that out).  I also have MS, Hypothyroid, Arthritis, Reynaud's and my rosacea has been acting up lately.  What treatment is suggested to help with rosacea?  I would like to know too if there is a test for celiac if you have been gluten-free?   Thank you, Barb    
    • K6315
      Newly gluten free… withdrawal?

      By K6315 · Posted

      Well, that's interesting. I am lactose intolerant and have been managing that for years. I'd be interested in seeing if that changes once I feel better from not eating gluten (one thing at a time for now, though). Helpful to hear about the avenin. I will do some digging and pose that to the dietitian. Grateful for your feedback.
    • kate g
      Nandos improper preparion celiac childrens food

      By kate g · Posted

      Recently my daughter ate in nandos harlow I rang in advance to speak about the celiac protocals and learned that childs portion chicken nandinos is cooked on the same grill as garlic bread even if they are celiac! Even if you clean it this is not good practise and will be making many children ill. I learnt adults butterfly chicken cooked on a grill purely for chicken.  This is fine and what we ordered however nandos need to take note of your practises for the safety of celiac children. my daughter has been ill from their nandinos chicken before and i emailed head office and they wouldnt accept responsibility 
    • Scott Adams
      High blood test numbers - with scales. Any advice?

      By Scott Adams · Posted

      I agree with @RMJ, you have multiple positive tests so celiac disease is likely.  This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease.     
    • trents
      Newly gluten free… withdrawal?

      By trents · Posted

      One small study found that 50% of celiacs react to the dairy protein "casein" like they do to gluten. It is also common for celiacs to be lactose (the sugar in milk) intolerant, though that often disappears in time as the villi heal. About 10% of celiacs react to the oat protein "avenin" like they do gluten.
×
×
  • Create New...