Confused About Testing Again After A Year Gluten Free.

[amy4444]

Excuse me if this is long but all my lifr ive suffered from heart palps, diahoreah and constipation (I though pooping five times a day was normal)

Stomach aches headaches depression vertigo and just generally flat and sluggish feeling, no energy etc. Often was vit d and iron deficient despite eating varied diet and taking supplements lots of sunshine.

The only times i ever felt good was when I tried diets that removed gluten while trying to lose weight.

So after my twins were born last year and I got very very ill probably because I started eating gluten foods every day. It got so bad that a slice of bread id get heart palps then dizzy then nausea then hours later diahorea stomach cramps then id be constipated. Heartburn also was another thing I always got.

Anyways I decided to go gluten and dairy free as dairy made me feel queasy.

Within weeks I felt great! Best I had ever felt. Even things I didnt think were related vanished. Dermatitis on my hands, joint pain......all gone. I felt alive!

Went to my doctor probably two months later with the great news he sent me to test for celiac. Blood tests showed negative. went and saw dietician to make sure my diet was good. She was happy but told me the tests were not accurate because i had to have been eating gluten for it to show positive.

I felt great, didntcare about the diagnosis so went on my merry way happy.

Fast forward six months and im feeling poo again. Ive now worked out buckwheat and corn are issues for me. Had an awful weekend after my husband brought gluten free corn bread instead of the usual one I buy. 6 hours after eating had the usual low down stomach cramps followed by diahoreah and now constipation days later.

The last few months ive been careful.

So I go to the doctor today, a new doctor because we moved city and he tells me hes never heard of anyone having issues with corn and that im probably still eating gluten.

So hes sent me for a tissue transglutaminase antibody test.

My question is.......what on earth is that supposed to tell him. I told him ive been gluten free for a year he seems to think I dont have problems with these otherthings and that im eating gluten somewhere.

I was never diagnosed celiac, I think this test is different to the first one I had but if I have been gluten free for this long what exactly is the point of this test?

He said if it shows nothing I go back in 6-8 weeks if theres still issues. So frustrating!

And can very minute traces of gluten really mess with you like this? I mean it is possible my food was contaminated and the buckwheat and corn was a coincedence but I did eat them a second time to make sure so im unconvinced.

The only time I feel good is if I havnt eaten or if I stick to veges eggs meat and fruit. Even some gluten free foods give me trouble.

Im feeling quite upset about having to restrict my diet more (corn and buckwheat if thats the problem) or to be even more strict with my food prep to ensure no gluten contamination.

Anyone have any advice or ideas? I feel like my doctor didnt listen or is he right in testing me again? I dont really understand how those tests work.

[w8in4dave]

Sounds like you know what your problems are! (Pooping 5 times a day? Thats all?)  1 I think your Celiac or your sensitive! Yes some are super sensitive to Gluten!! Just w8 till they chime in!! 2nd yes you can be sensitive to Corn!! I have just figured out that I am!! How do I know? Hmm I can eat corn chips right now and in the middle of the night I will have stabbing pains, bloating and gas that is PAINFUL! Thats a problem! And just because a Dr. Has not heard of something does not mean it doesn't exists.. There are crazy allergies out there.  I think there will be alot of people here that will say that you are on the right track. My Dr. did not think I had Celiac until the test came back positive. you can always get a second opinion Huggs to you! 

[pugmug]

I think corn allergy/intolerance is pretty common...enough so that a doctor shouldn't be surprised by it!

If you've been gluten free for a year your blood test will be negative.

Hope you feel better soon!

[amy4444]

Thanks so is there any test that can be done if I have been gluten free for a year for celiac?

Do you know what this test is and if it is likely to say much if I havnt been eating gluten?

Definitely agree with the corn! I found it strange he was so quick to dismiss it and wanted to focus on gluten still being an issue.

If its not in a packet im fine so fresh produce is what i can eat basically if I want to feel good otherwise if I eat anything other than fresh food I just go downhill.

If I eat hluten I usually get liquid filled itchy bumps on my fingers which dries and is quite sore. But I havnt had that recently so I dont think ive had any gluten. Tummy cramps are very similar though.

And the pooping 5 times was a minimum lol it was so regular but I grew up like that so thought it was normal.

[amy4444]

I'm new so my posts are delayed a bit. I thought that was the case which is why I asked as I felt it was waste of time ordering these bloods. I questioned him about it but he just seemed really dismissive and questioned whether my diet was even truly gluten free. Saying the corn bread would of had gluten, even though it says gluten free.

Is this a common thing for doctors to do?

Since browsing the forums I read a few things.......people avoiding wheat in their hair products etc. Well I feel like a right lummy cos guess whats in my shampoo conditioner and body soap??? Wheat.

Can people really react to shampoos etc? Should I be switching these? No ones ever even mentioned beauty products to me.

[GF Lover]

Beauty products are only a concern if the product can get in your mouth ie: shampoo in the shower, lipstick.  It also sounds like you have a concern about your kitchen prep.  You may need to become very strict with your protocols.  Are you using a shared kitchen?  Do you have your own condiments? Do you have a separate toaster, cutting board?  Do you take medications/suppliments that may have gluten in them?  I would look at those things before restricting your diet more.  If you take care of any sources of gluten you may be getting, then possibly look at other food intolerances. 

 

Colleen

[w8in4dave]

No I don't think there is a test for Celiac if you have been Gluten Free for a year. Altho he can test for the gene. Some people can have the gene and not have the symptoms of Celiac. 

Maby try a food diary. Thats what actually helped me figure out my corn intolerance. Someone sent me this link maby you should read it also Open Original Shared Link quite interesting... 

[kareng]

Anyways I decided to go gluten and dairy free as dairy made me feel queasy.

Went to my doctor probably two months later with the great news he sent me to test for celiac. Blood tests showed negative. went and saw dietician to make sure my diet was good. She was happy but told me the tests were not accurate because i had to have been eating gluten for it to show positive.

I felt great, didntcare about the diagnosis so went on my merry way happy.

So I go to the doctor today, a new doctor because we moved city and he tells me hes never heard of anyone having issues with corn and that im probably still eating gluten.

 

 

 

Get another doctor.  You don't have to put up with a doctor that doesn't know what he is talking about. 

 

If you want to get diagnosed, you will need to start eating gluten again.  If you get DH, you can get the dermatologist to biopsy next to the new lesion.  That counts as a diagnosis.  Sometimes the DH shows up quickly when you start eating gluten.

[eers03]

Colleen makes some great points.   There are some varying schools of thought out there but unless you are ingesting the gluten--you should be fine.  The only thing I would add is that sometimes physicians will order a TTG or deamidated gliadin to ensure compliance to the diet.  If your markers are up, it most likely could mean that gluten is sneaking into your diet somewhere.  

 

My physicians use deamidated gliadin because I am IGA Absent making the TTG irrelevant for me.  After a year of being gluten-free my DG went from 83 in January to 15 this month.  So, it takes awhile for it to go down but it shows that I am being compliant. (per se)

 

From what I gather, nightshades really affect some people.  The only thing I would caution you against is going too light on your carbs if you don't have to.  If you are truly allergic to corn, thats one thing...  However, carbs are an important part of ones diet as well, particularly if you are active.

 

I am with you though...  I am supposed to be able to eat gluten free oats but I'm here to tell you that when I do...  Lets just say I don't plan a date night for that evening :-)  Maybe yours is corn...

[GFinDC]

Hi Amy,

 

Yes, very small amounts of gluten can make you sick.  Celiac disease is an autoimmune condition, and your immune system is very sensitive.  If it weren't germs would take over your body and do nasty things to you.  So it is always active looking for possible invaders, like gluten.  When it detects an invader it goes into active attack/defense mode and that can last for a couple weeks or more.

 

It sounds like you may have dermatitis herpetiformis (DH), because of the bumps on your fingers.  There is a section of the forum that is dedicated to that manifestation of celiac disease where you can get more information.  You should know that DH can get worse with repeated exposure to gluten, and can spread over larger areas of you body.  So it is something  to be careful about, you don't want that to happen.  You could get a biopsy of the skin near a bump like KarenG suggested.  That is how they test for DH, which is something only people with celiac disease get.  So if you test positive for DH, you do have celiac disease.  Your doctor may know a dermatolgist who is familiar with DH testing.  If there is a celiac support group in your area, they may be able to recommend a good doctor.

 

Sometimes people forget to check their vitamin pills and meds for gluten.  Even tea can sometimes have gluten in it.  Gluten is in wheat, rye, barley (and malt).  Some of us react to gluten in oats also.  And sharing peanut butter or mayo jars with gluten eaters, or kissing a gluten eater before they brush their teeth can also get you.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.
Watch out for cross contamination.

Helpful threads:

FAQ Celiac com
https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

 

[dilettantesteph]

Doctors only have about 30 seconds per patient so it's no wonder they aren't effective communicators.  What I think he meant is that you are more likely to be reacting to contamination in the corn and buckwheat than the corn and buckwheat themselves.  I have heard of celiacs with additional sensitivities, but also,  I have carefully sorted through whole corn and whole buckwheat and found what looked like gluten grains in them.  You can find reports about contamination of gluten free grains by gluten grains that occur during farming, harvest etc.  Since you have problems with packaged foods, you may have a lower sensitivity level that would also be bothered by this low level of contamination that doesn't seem to affect more typical celiacs.  Your shampoo etc. would fit into that same category.  Less sensitive celiacs have no problem with that kind of thing.  More sensitive celiacs avoid that kind of thing.  A reaction to this low level contamination could show up on your blood test.  A negative test, however, would not indicate a lack of reaction as there are those with negative blood tests yet positive biopsies upon diagnosis.  If you are a more sensitive than typical celiac you will have to take more precautions than typical to be symptom free.

[amy4444]

Thankyou all so much. I never knew that about my hands it was awful! My doctor gave me creams that never helped I tried a bunch of creams that did nothing. At my worst (before going gluten free last year) it had gone from just my pinky finger to half of my palm and my other hand had started up.

But eating gluten free it vanished and has only come back a few times when I know ive been glutened.

Im not really keen on eating gluten again. But am interested in doing that biopsy.

Wish I knew all this prior. And yes theres definately a chance of cross contamination. My husband and kids only eat gluten free dinners with me. Their lunchand breakfasts have gluten. So I will dedicate a corner and try and keep everything seperate. I had read about small amounts affecting people but I didnt think that would be the case for me (or maybe I just didnt want it to be)

With the shampoo yeah the water sometimes gets in my mouth.

I do definitely think that corn was a prpblem but maybe it was just how it was processed as I dont usually eat it when its grainy like that.

Told my husband he needs to brush his teeth before kissing me, im sure he thinks im nuts lol

[1desperateladysaved]

I have intolerance issues with both corn and buckwheat, so I know it is within the realm of possibility!  I also had cross contamination issues beginning 4 days after gluten free.  I also hoped I wasn't going to need about strigently avoiding all gluten, but now I am glad I did it.  The payoffs were worth it~  

 

In spite of my intolerances of these items, I have many exciting foods I can eat.

 

D