Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter
3 3
Marshmallows_17

Don't know what to do

Rate this topic

Recommended Posts

I have a history of endometriosis had surgery and then initially gluten sensitivity (diagnosed by a herbal doc not official)

Endo went into remission after having 2 kids 

I was gluten free for a year or so then started to slip for past 10 years I've been eating it although I've always been light on the gluten anyway don't eat cereal or toast at breakfast or sandwichs for lunch so the majority would just be if I had pasta etc with dinner.  

About 2 years ago I started to feel bad again cramping, terrible periods constant neusea I cut lactose out of my diet and the neusea subsided.  But the cramping continued. 

Then recently I developed a rash on my fingers little blisters doctor prescribed steroid cream, I googled and came a gross DH I trialled going gluten-free for a week and the itching started to calm down. 

I spoke to doctor and was told to add gluten back for a week and then have bloods.  So I ate it 2/3 times a day for 1 week by the end of the week I was a mess.  

Headaches, all over itching, bruised all over, tired, mood swing, constipation, cramps, tingling in my neck and I started to feel suicidal to the point my family were starting to worry. 

The bloods were negative 😒

I don't know where to go from here I cannot do a gluten challenge for 6 weeks I wouldn't last that long.  

I've been completely gluten-free for nearly 2 weeks now and the rash is no where near as itchy.  It flairs up about 2 hours later if I've accidentally missed something.  

I feel so much better and not like I want to kill someone! 

Have I got any chance of getting an official diagnosis by the rash alone? Biopsy not an option either as I've read that also requires consumption.  

I'm happy to stay gluten-free but I don't want to miss out of necessary checks if it is celiac and concerned it will affect my work as I work with loose flour and this triggers a reaction 😩

Share this post


Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


11 minutes ago, Marshmallows_17 said:

I have a history of endometriosis had surgery and then initially gluten sensitivity (diagnosed by a herbal doc not official)

Endo went into remission after having 2 kids 

I was gluten free for a year or so then started to slip for past 10 years I've been eating it although I've always been light on the gluten anyway don't eat cereal or toast at breakfast or sandwichs for lunch so the majority would just be if I had pasta etc with dinner.  

About 2 years ago I started to feel bad again cramping, terrible periods constant neusea I cut lactose out of my diet and the neusea subsided.  But the cramping continued. 

Then recently I developed a rash on my fingers little blisters doctor prescribed steroid cream, I googled and came a gross DH I trialled going gluten-free for a week and the itching started to calm down. 

I spoke to doctor and was told to add gluten back for a week and then have bloods.  So I ate it 2/3 times a day for 1 week by the end of the week I was a mess.  

Headaches, all over itching, bruised all over, tired, mood swing, constipation, cramps, tingling in my neck and I started to feel suicidal to the point my family were starting to worry. 

The bloods were negative 😒

I don't know where to go from here I cannot do a gluten challenge for 6 weeks I wouldn't last that long.  

I've been completely gluten-free for nearly 2 weeks now and the rash is no where near as itchy.  It flairs up about 2 hours later if I've accidentally missed something.  

I feel so much better and not like I want to kill someone! 

Have I got any chance of getting an official diagnosis by the rash alone? Biopsy not an option either as I've read that also requires consumption.  

I'm happy to stay gluten-free but I don't want to miss out of necessary checks if it is celiac and concerned it will affect my work as I work with loose flour and this triggers a reaction 😩

https://ibb.co/0DdfXk0

- rash 

Share this post


Link to post
Share on other sites

My gluten challenge was 2 weeks with endoscope and colonscopy. Did they offer that option. I have read  the 12 week challenge is what is best to yield positive bloodwork or positive DH result.  

In the end I was diagnosed NCGS , my rash did not appear during my challenge possibly  as I was on both H1 and H2 antihistamines ,had been eating gluten-free for 3 years prior, or a combo of all those . It is possible one of those factors or multiple factors didn't yield my rash. The rash I had prior to going gluten-free the first time has appeared since since my gluten challenge  if I have a cc incident.

When I went through this the best option I had with the least amount of time eating gluten was a two week challenge and scopes /endoscope and colonscopy.

Good luck

Share this post


Link to post
Share on other sites

If you can't complete the gluten challenge due to symptoms, that pretty much means you shouldn't eat gluten.  Regardless of any test results, if your body can't handle it then you should not eat it.

I don't know of any approved testing that doesn't require a gluten challenge.

There is a gene test you can take, but it only shows your are in the pool of 30% or so of people that are able to develop celiac disease.  So, while it might be nice to know if you have the genes, it doesn't prove you have celiac disease by itself.  It's kind of a bad catch 22 having to do a gluten challenge for celiac testing.  Bummer, but it's all they have right now.


Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

3 3


  • Celiac.com Sponsors (A19):


  • Member Statistics

    • Total Members
      91,994
    • Most Online
      6,255

    Newest Member
    Bob Loblaw
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      115,609
    • Total Posts
      969,351

  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)


  • Celiac.com Sponsor (A22):


  • Blog Entries