Looking for Advice

[rfitzgibby]

Hi All:)

I just joined this forum, and you are the group of people who have the knowledge and first hand experience I need to tap into. MY STORY: I landed in the hospital several years ago with what they diagnosed as gastritis. After being so sick, I vowed to eat healthy and focused on fruits and vegetables. This led me to the realization that I got sick whenever I ate anything that had gluten in it. I was in denial for years, but by eliminating and then reintroducing gluten, I have stumbled upon the fact that I can't have the foods I used to love so much.

I stick to a gluten free diet, not knowing if I am gluten intolerant or celiac. My DNA test indicates I have a "slightly "increased risk for developing celiac,  Question: Is there a way to determine if I actually have celiac disease (since I have been gluten free for years)? I am having a bad episode as I write this- seems to happen whenever I eat out (even if they say it is gluten free). I owe it to my daughters to find out for sure.

Thanks for reading...I appreciate it!

Renee

[GFinDC]

Hi,

There are 2 main forms of celiac testing.  The blood tests check for antibodies in the bloodstream.  The endoscopy checks for damage in the small intestine that is typical of celiac disease.  Both of these tests require the person to have been eating gluten long enough for either the antibodies to show up in the bloodstream or damage to show up in the gut.  For the endoscopy that is usually 2 to 4 weeks but for the blood antibodies it is 12 weeks.  This period of eating gluten daily to prepare for testing is called a gluten challenge.

The gene test is the only one that doesn't require you to be eating gluten at all.  But the gene test doesn't confirm you have celiac, only that you could develop celiac.

We always encourage people to get tested before going gluten-free.  That is because it is faster than doing a gluten challenge, and also doing a gluten challenge can be very unpleasant after being gluten-free.

Your daughters should be tested via blood antibodies every few years or sooner if they develop symptoms.

One other test you could consider is a measurement of your vitamin and mineral levels.  Your daughters could be tested for that also.  Since celiac disease can cause malabsorption it is somewhat common for sufferers to have vitamin and/or mineral deficiencies.  Vitamin D and the B vitamins are some of the frequent problems. 

[Awol cast iron stomach]

I had to do the challenge since I had gone gluten free before. Long story and 20 plus years misdiagnosed.

At this time I don't think researchers have come up with a method other than the challenge .

Even though I was gluten-free before the challenge I lived in a gluten home and kept food separate etc. In the end my DH and ataxia especially in addition to my other symptoms require us to be a completely gluten-free household. I realize now I was doing gluten-free wrong . I also didn't know for sure so I never joined this forum .  I didn't officially join the forums here where I learned the proper and safe way to live life with this illness until I was seen by a team willing to test me for Celiac.

A challenge was not easy. As gluten-free in DC says I was diagnosed vitamin D deficient 8 years before my diagnosis. celiac /DH was not what my Drs over the years thought of . My general labs testing didn't show any autoimmune issues.  My symptoms were addressed separately and I am not even certain they looked at past records to connect the dots.

Our home is completely gluten-free, I do not eat out.  I was told by one Dr, I can not even eat in the lunchroom at work as gluten is too prevalent. The volume of people who eat in there for 3 lunch shifts generates a lot of cc potential.  I got cc 3 times in 5 months of starting the job.  ( even with my vigilance - I kept my lunch separate place used a placemat etc. ) 

So there is much to learn about the gluten-free life that as of now you may not realize. You may not even know the infinite details that we address in daily life.

Welcome and Good luck on your journey 

 

Edit infinite ? autocorrect inncorrect

Edited May 12, 2019 by Awol cast iron stomach
Autocorrect incorrect

[Debra smallwood]

I found out through the aip diet and knowing I have several vitamin deficiencies that I have celiac disease I am scared to be tested because I get such a bad reaction if I eat something even with traces of gluten in it I also can't tolerate dairy .. are tall saying that by having bread in the house I can be getting exposed. My neropathy is not going away and I have still have brain fog and fatigue sometimes I know it's off topic I just don't know where to go to ask please and thank u 

[GFinDC]

Hi Debra,

You could be exposed if the other people in your house are careless, or if you are careless yourself.  Things like sharing the same butter or peanut butter or mayo can be a problem.  I live with gluten eaters myself and have to be careful about things like that.  I have a small dorm refrig I keep some food in so I don't have to worry about it.  Things as simple as having separate silverware in a jar or something and rinsing your plates and dishes before using them help.  Also I have my own toaster so that's not a cc problem.

Nerve issues are not something that heal quickly though.  So it's good to be careful and make sure you get enough B vitamins.

[helen redden]

can i use the same silverware and can my dishes be washed with other persons dishes and dishcloth

[cyclinglady]

17 hours ago, helen redden said:

can i use the same silverware and can my dishes be washed with other persons dishes and dishcloth

You can if washed in a dishwasher.  However, if you are hand washing, then I would advise washing items separately and use a different dishcloth or sponge.   

Here is more information about cross contamination for avoiding gluten: 

https://www.beyondceliac.org/gluten-free-diet/cross-contact/

Edited May 14, 2019 by cyclinglady