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
  On 12/5/2018 at 8:38 PM, 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?

Expand Quote  

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
  On 12/5/2018 at 8:38 PM, 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?

Expand Quote  

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

  • 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. trents
      - trents replied to Maura Gissen's topic in Food Intolerance & Leaky Gut
      5

      Autoimmune Reaction to SO many foods

      I'm a little confused. In your second post you said, "but these symptoms have been ongoing for a long time before the pregnancy" while in your most recent post you say, "I was doing a lot better on the AIP diet. However, I was unable to do the full reintroduction process because I went off the AIP diet when I got pregnant and was experiences chronic nausea...
    2. Maura Gissen
      - Maura Gissen replied to Maura Gissen's topic in Food Intolerance & Leaky Gut
      5

      Autoimmune Reaction to SO many foods

      They did. I was doing a lot better on the AIP diet. However, I was unable to do the full reintroduction process because I went off the AIP diet when I got pregnant and was experiences chronic nausea. This is what makes me believe it's food related. I do check all of my food products and supplements and I am very careful about them being gluten free...
    3. trents
      - trents replied to Maura Gissen's topic in Food Intolerance & Leaky Gut
      5

      Autoimmune Reaction to SO many foods

      Did the symptoms commence after you discontinued the AIP diet? Have you checked all nutritional supplements and oral hygiene products for possible gluten content? Have you recently checked all the labels of purchased processed foods in your pantry to check for formulation changes that might have introduced gluten? Historically, when "glutened" did...
    4. Maura Gissen
      - Maura Gissen replied to Maura Gissen's topic in Food Intolerance & Leaky Gut
      5

      Autoimmune Reaction to SO many foods

      Hi Trent! Thanks so much for your warm welcome and questions! They do, but these symptoms have been ongoing for a long time before the pregnancy. However, it's hard for me to know what's a celiac response vs. a Hashimotos one. I haven't, maybe it's worth getting those checked again?
    5. trents
      - trents replied to Maura Gissen's topic in Food Intolerance & Leaky Gut
      5

      Autoimmune Reaction to SO many foods

      Welcome to the forum, @Maura Gissen! Don't those same symptoms often come along with the territory when pregnant? And then throw in Hashimoto's. Have you had your celiac antibody levels checked recently?
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,977
    • Most Online (within 30 mins)
      7,748
    Sam777
    Newest Member
    Sam777
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      71.4k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Autoimmune Reaction to SO many foods

      By trents · Posted

      I'm a little confused. In your second post you said, "but these symptoms have been ongoing for a long time before the pregnancy" while in your most recent post you say, "I was doing a lot better on the AIP diet. However, I was unable to do the full reintroduction process because I went off the AIP diet when I got pregnant and was experiences chronic nausea." CBC = Complete Blood Count. This is the typical bloodwork most people would have done routinely with an annual wellness checkup. I would include things like iron levels, various blood cell counts including reds and whites and other infection fighters. CMP = Complete Metabolic Panel. This would measure things like blood sugar, kidney...
    • Maura Gissen
      Autoimmune Reaction to SO many foods

      By Maura Gissen · Posted

      They did. I was doing a lot better on the AIP diet. However, I was unable to do the full reintroduction process because I went off the AIP diet when I got pregnant and was experiences chronic nausea. This is what makes me believe it's food related.  I do check all of my food products and supplements and I am very careful about them being gluten free and trying to stay away from corn starch etc. However, I am eating gluten free breads that sometimes have rice flour, yeast, etc. - I seem to do fine with these breads/bread products some days, but then am sick other days.  I have never really had any GI symptoms outside of bloating. My symptoms are dizziness, brain fog, and a general feeling of...
    • trents
      Autoimmune Reaction to SO many foods

      By trents · Posted

      Did the symptoms commence after you discontinued the AIP diet? Have you checked all nutritional supplements and oral hygiene products for possible gluten content? Have you recently checked all the labels of purchased processed foods in your pantry to check for formulation changes that might have introduced gluten? Historically, when "glutened" did you have GI symptoms or were you a "silent" celiac whose symptoms were non GI. Is what you are experiencing now like what you were experiencing at the time of diagnosis? Have you had recent blood work done (CBC and CMP) and if so, were there any parameters out of norm? I know you have Hashimoto's but you say that is...
    • Maura Gissen
      Autoimmune Reaction to SO many foods

      By Maura Gissen · Posted

      Hi Trent! Thanks so much for your warm welcome and questions! They do, but these symptoms have been ongoing for a long time before the pregnancy. However, it's hard for me to know what's a celiac response vs. a Hashimotos one. I haven't, maybe it's worth getting those checked again? 
    • trents
      Autoimmune Reaction to SO many foods

      By trents · Posted

      Welcome to the forum, @Maura Gissen! Don't those same symptoms often come along with the territory when pregnant? And then throw in Hashimoto's.  Have you had your celiac antibody levels checked recently?
×
×
  • Create New...