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

Pre Celiac testing question!

DesireeRose

Recommended Posts

DesireeRose Newbie
DesireeRose
Posted

Hello,

my name is Desiree and I have a question for those of you out there who have Celiac, or anyone who is going through the testing for a diagnosis. 

 

to begin with, I have pretty much all of the symptoms of Celiac Disease:

brain fog

gastritis

achy joints

60 lb weight loss

irritability

always thirsty

anxiety/occasional depression

tingling in feet/hands

stomach pains right in the belly button region

nausea

lack of appetite

migraine headaches

sudden bowel movement (after gluten ingestion)

fatigue

palpatations

bloating

(TMI) undigested food in stool

orange substance after wiping

B12 deficiency

SLOW digestion (Gastroparesis)

and a few others

 

I was eating a vegan diet which consisted of a lot of gluten and I felt like death warmed over. I decided one day that I was going to switch over to a gluten-free diet known as Whole30 (4 weeks ago) and felt an improvement so I decided to go to the doctor and asked to be tested for Celiac. But little did I know that I needed to be on a gluten diet for it to come up positive and my doctor didn't tell me this, so it came up negative. I am afraid to consume any gluten or have any cross contamination because even the smallest amount puts me out for 3-4 days. I just recovered from a experiment I did on myself (stupid idea, I know, but I wanted to test it out) I ate a piece of bread after not consuming gluten for 3 weeks and the result of that had me ill for awhile. I had some cross contamination last night on accident and today I am really suffering with stomach pain, brain fog, fatigue, and bloating. I've also been tested for diabetes which was negative as well.

What is there to do in these kinds of situations? I've been dealing with this for a little over a year now and there are some times that I cannot eat because I am so ill. What does it take to get a proper diagnosis? I am just lost in what to do. I guess I will self diagnose and continue to listen to my body because I know it better than any doctor.

any suggestions will be extremely helpful! Thank you!

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted
11 hours ago, DesireeRose said:

Hello,

my name is Desiree and I have a question for those of you out there who have Celiac, or anyone who is going through the testing for a diagnosis. 

 

to begin with, I have pretty much all of the symptoms of Celiac Disease:

brain fog

gastritis

achy joints

60 lb weight loss

irritability

always thirsty

anxiety/occasional depression

tingling in feet/hands

stomach pains right in the belly button region

nausea

lack of appetite

migraine headaches

sudden bowel movement (after gluten ingestion)

fatigue

palpatations

bloating

(TMI) undigested food in stool

orange substance after wiping

B12 deficiency

SLOW digestion (Gastroparesis)

and a few others

 

I was eating a vegan diet which consisted of a lot of gluten and I felt like death warmed over. I decided one day that I was going to switch over to a gluten-free diet known as Whole30 (4 weeks ago) and felt an improvement so I decided to go to the doctor and asked to be tested for Celiac. But little did I know that I needed to be on a gluten diet for it to come up positive and my doctor didn't tell me this, so it came up negative. I am afraid to consume any gluten or have any cross contamination because even the smallest amount puts me out for 3-4 days. I just recovered from a experiment I did on myself (stupid idea, I know, but I wanted to test it out) I ate a piece of bread after not consuming gluten for 3 weeks and the result of that had me ill for awhile. I had some cross contamination last night on accident and today I am really suffering with stomach pain, brain fog, fatigue, and bloating. I've also been tested for diabetes which was negative as well.

What is there to do in these kinds of situations? I've been dealing with this for a little over a year now and there are some times that I cannot eat because I am so ill. What does it take to get a proper diagnosis? I am just lost in what to do. I guess I will self diagnose and continue to listen to my body because I know it better than any doctor.

any suggestions will be extremely helpful! Thank you!

Welcome!  

Sorry to hear that you had been gluten free when you were tested for celiac disease.  The only way to get an official diagnosis is to do a gluten challenge under a doctor's care:

Open Original Shared Link

As far as recovering from a glutening?  Everyone is different.  It can take a week or months to recover.  There is no speedy way...rest, stay hydrated....

 

Jmg Mentor
Jmg
Posted

Welcome Desiree :)

Lot's of people, myself included, wind up in the same situation you have, removing gluten from the diet then finding out they need to go back on it for testing.

13 hours ago, DesireeRose said:

What does it take to get a proper diagnosis?

Unfortunately there's no option other than the challenge. I know it's the last thing you feel like after experiencing a health improvement on your diet. You need to weigh up the pros and cons and decide if you want to do it. If you do, there's lot's of advice and support available here to help you through it.

For me although the initial feeling of going back on gluten was unpleasant and it wasn't nice to see symptoms return, the challenge became easier as it went on. 

13 hours ago, DesireeRose said:

I guess I will self diagnose and continue to listen to my body because I know it better than any doctor.

If you do this you may want some advice on the gluten-free diet as there's lot's of ways you can slip up.

 

DesireeRose Newbie
DesireeRose
Posted
  • Author

Thank you guys! I am afraid to do the gluten challenge because eating gluten makes me bed ridden sick. I've read on different sites on how much you need to consume for 'X' amount of time, but is it really necessary to suffer that long? I want to make sure that I have plenty of time to consume gluten before going back to the doctor to be retested, though. It just seems like torture is all.

I appreciate all of the support already! Thank you so much for the replys!

Feeneyja Collaborator
Feeneyja
Posted

I was gluten free four 3 years because of my daughter, not linking a long list of health issues my whole life to gluten until recently. I did the gluten challenge for only 4 weeks. No diagnosis (negative endoscopy, no blood work) but terrible symptoms, so that's it for me. Some of the syptoms got somewhat more tolerable (not really better), others got worse. It's a difficult choice to make. 

cyclinglady Grand Master
cyclinglady
Posted

Only you can make a decision on whether to do a challenge or not.  My hubby went Gluten Free 12 years before I was officially diagnosed.  He refuses to do a challenge, because we need to pay our bills and we know that gluten makes him sick.  Why would anyone remain gluten free for more than 16 years if they did not need to?  

He does tell me that I have received way more support from medical, family and friends.  It also has helped other members in my family (easy to ask for a celiac screening for my kid).  

Good luck!  Do what is best for you.  

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. Rogol72
      - Rogol72 replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying...
    2. Scott Adams
      - Scott Adams replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin. In the early 1900s, refined white flour replaced whole grains, and people began...
    3. Scott Adams
      - Scott Adams replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted...
    4. JoJo0611
      - JoJo0611 replied to JoJo0611's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      CT with contrast.

      Thank you.
    5. deanna1ynne
      - deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased int...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,441
    • Most Online (within 30 mins)
      7,748
    Linda Boxdorfer
    Newest Member
    Linda Boxdorfer
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Rogol72
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Rogol72 · Posted

      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying it once. It's fortified with Calcium and Iron. https://www.warburtonsglutenfree.com/warbs_products/white-loaf/ The only other gluten-free bread that I've come across that is fortified is Schar with Iodized salt, nothing else.
    • Scott Adams
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Scott Adams · Posted

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
    • JoJo0611
      CT with contrast.

      By JoJo0611 · Posted

      Thank you. 
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased intraepithelial lymphocytes, preserved villous architecture, and patchy foveolar metaplasia,” which we are told is still inconclusive…  We will have her go gluten free again anyway, but how soon would you all test again, if at all? How valuable is an official dx in a situation like this?
×
×
  • 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.