Pre Celiac testing question!

[DesireeRose]

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!

[cyclinglady]

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]

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]

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]

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]

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.