Am I Highly Sensitive? When Will I Feel Better?

[Kias4]

I've been eating gluten-free for three years due to terrible GI issues that I experienced otherwise.  In the last four months or so, the GI symptoms have begun to return and make my life difficult despite eating gluten-free. Also despite my gluten-free diet, my allergist recently decided to test my blood for celiac disease, and it shockingly came back with a positive result.

 

For the time-being, I have decided not to purse the intestinal biopsy since the false-positive rate for the blood test is only like 5% and I'm a classic textbook example of celiac symptoms.  I just can't imagine doing the gluten challenge - I've been sick for months on a gluten-free diet and now I know it was probably all from cross-contamination.  I imagine I'd be bed-ridden if I tried to do the gluten challenge.

 

So now I'm trying to go through our house and eliminate all sources of cross-contamination.  It's a headache.  I am still sick every day.  With two young boys who love gluten products and who now need to be tested for celiac disease, making the whole house gluten-free isn't currently an option.  So I'm constantly fighting a battle.

 

I've done all the suggested - replace colander, cutting board, wooden spoons, etc.  I wash my hands diligently.  I have two separate kitchen sponges.  But I'm still feeling miserable.  It's only been a week, but when I originally went gluten-free three years ago I felt immediately better.  This time isn't the same way.

 

So my questions are:

1) Is anyone else so highly sensitive that they have to go to EXTREME measures to feel ok?? What else do I need to do?

2) Or is it just that my body needs time to heal, and maybe the measures I'm taking are enough but my body just isn't reacting yet?

 

I just want to feel better!  Thanks so much!

 

 

 

 

[cyclinglady]

Slow down. You just need time!

Sounds like you are doing a good job of now preventing cross contamination. But, I would try to make your house as gluten-free as possible. One of our forum members is an MD and has celiac disease. She found that she was getting glutened by her tiny kids. They spread gluten with slobbery kisses and spread it around the house. She got her kids tested and went gluten-free even though they all did not have celiac disease. She could not afford to miss work! So make a plan to keep gluten in certain areas of the house. My husband was gluten-free when my daughter was small (I was dxed last year). With the exception of dinner at the dining room table, I made her eat and drink in the kitchen (like my mom did for my siblings except that was to minimize the mess we made). Washing hands and her face was important because we did not want to gluten Daddy. Our house was gluten light.

Now, she is 13. She makes gluten-free waffles, but if she wants a croissant, she eats it outside the house, literally (ha! At school, bakery or in the backyard with her gluten eating friends). No gluten in my car and her friends know it! She gets lots of gluten in her school lunch. I had her tested earlier this year when after the Health Act started and she had no symptoms --even anemia like me (self-employed/used to be hard to get insurance...long story). She is fine for now. But now that there are two celiac disease folks in the house, I basically do not allow gluten except for pre-packaged items or ones that I control (like getting a croissant out of the freezer). She is a kid and I do not want her to make us sick! The other concession is gluten noodles which I prepare/clean up and that is for her lunch. Dinner is gluten-free pasta if we are having spaghetti. She wants a burrito, then we stop and buy one. Luckily she loves tacos!

She loves baking, but it is all gluten-free. She chose a gluten-free chocolate mayonnaise cake I made over the bakery cake that Grandma offered for her birthday. So, it is possible to have yummy gluten-free foods!

I rambled....memories of that Little Tikes picnic table in the kitchen .....but I hope this helps. Things change, you might have even more damage than you thought, but it will get better!

[dilettantesteph]

Your allergist may not have given you the right tests.  You should see a GI doctor.  Did the tests indicate gluten contamination?  Did they show gliadin antibodies?  My son and I are both very sensitive and need a gluten-free household as well as a very careful diet.  Perhaps you should hurry up and get your kids tested so that you can make the change.  Nonetheless, you were feeling better before without a gluten-free household.  Did you make some change to your diet in the last 4 months that might be responsible for the change in symptoms?  Is cross contamination by your kids the best assumption, when it wasn't an issue before?  I hope you feel better soon.

[Kias4]

Your allergist may not have given you the right tests.  You should see a GI doctor.  Did the tests indicate gluten contamination?  Did they show gliadin antibodies?  My son and I are both very sensitive and need a gluten-free household as well as a very careful diet.  Perhaps you should hurry up and get your kids tested so that you can make the change.  Nonetheless, you were feeling better before without a gluten-free household.  Did you make some change to your diet in the last 4 months that might be responsible for the change in symptoms?  Is cross contamination by your kids the best assumption, when it wasn't an issue before?  I hope you feel better soon.

 

I had the DGP IgA test, so I'm pretty sure I have celiac.  The DGP doesn't pick up on gluten-sensitivity, only celiac disease, as much as I've read.

 

I do it has all been from cross-contamination.  The symptoms that restarted were all the gluten symptoms I previously had prior to the gluten-free diet.   I've read of sensitivity increasing over time.  

 

Thanks for your suggestions.

[Kias4]

Slow down. You just need time!

Sounds like you are doing a good job of now preventing cross contamination. But, I would try to make your house as gluten-free as possible. One of our forum members is an MD and has celiac disease. She found that she was getting glutened by her tiny kids. They spread gluten with slobbery kisses and spread it around the house. She got her kids tested and went gluten-free even though they all did not have celiac disease. She could not afford to miss work! So make a plan to keep gluten in certain areas of the house. My husband was gluten-free when my daughter was small (I was dxed last year). With the exception of dinner at the dining room table, I made her eat and drink in the kitchen (like my mom did for my siblings except that was to minimize the mess we made). Washing hands and her face was important because we did not want to gluten Daddy. Our house was gluten light.

Now, she is 13. She makes gluten-free waffles, but if she wants a croissant, she eats it outside the house, literally (ha! At school, bakery or in the backyard with her gluten eating friends). No gluten in my car and her friends know it! She gets lots of gluten in her school lunch. I had her tested earlier this year when after the Health Act started and she had no symptoms --even anemia like me (self-employed/used to be hard to get insurance...long story). She is fine for now. But now that there are two celiac disease folks in the house, I basically do not allow gluten except for pre-packaged items or ones that I control (like getting a croissant out of the freezer). She is a kid and I do not want her to make us sick! The other concession is gluten noodles which I prepare/clean up and that is for her lunch. Dinner is gluten-free pasta if we are having spaghetti. She wants a burrito, then we stop and buy one. Luckily she loves tacos!

She loves baking, but it is all gluten-free. She chose a gluten-free chocolate mayonnaise cake I made over the bakery cake that Grandma offered for her birthday. So, it is possible to have yummy gluten-free foods!

I rambled....memories of that Little Tikes picnic table in the kitchen .....but I hope this helps. Things change, you might have even more damage than you thought, but it will get better!

 

Thank you for your encouragement!  I need to hurry up and get my kids tested so we can go mostly gluten-free in the house I think.

[w8in4dave]

Are you eating any gluten-free oats? Just wondering because alot of people have problems with gluten-free oats. Or are you eating any Soy? I have recently found out that Soy is one of the most CC'd as is Oats. My kitchen is not gluten-free but I keep all my gluten-free stuff in a totally different cupboard. No one eles is allowed to even open it. I don't put anything on the counters I use a platter and or my own cutting board to do any mixing or anything gluten-free. My husband supports me and says he can eat the way I do. Then he says I need some noodles! I'm like you don't need them you want them. I am going to start getting him Rice noodles. 

[Kias4]

Are you eating any gluten-free oats? Just wondering because alot of people have problems with gluten-free oats. Or are you eating any Soy? I have recently found out that Soy is one of the most CC'd as is Oats. My kitchen is not gluten-free but I keep all my gluten-free stuff in a totally different cupboard. No one eles is allowed to even open it. I don't put anything on the counters I use a platter and or my own cutting board to do any mixing or anything gluten-free. My husband supports me and says he can eat the way I do. Then he says I need some noodles! I'm like you don't need them you want them. I am going to start getting him Rice noodles. 

 

I am eating gluten free oats in Udi's Granola, yes.  And I stay away from most soy, but I do eat products with soy lecithin.  It's so hard to figure out if I have another food issue when I know my DGP antibodies were high, because I know that means I've been getting gluten as well.  

[dilettantesteph]

The oats would not be another food sensitivity so much as another autoimmune reaction initiator. 

Open Original Shared Link

That reference gives a range from 0.5 to 20% of celiacs who have this problem with oats. 

Udi's have granola products without oats, why don't you try one of those and see what happens?

 

I hope that you can figure it out without having to take drastic measures.  I would carefully go through my diet and routine and think about what changes were made prior to experiencing symptoms again.  You said that you were doing well for three years and now you are sick every day.  Some change caused that.  It could have been a change in sensitivity, but I think that it is more likely a change in exposure.

[beth01]

Have you gotten any animals recently?  A lot (ok most) pet foods have gluten in them.  I got glutened one day and knew without a doubt that I hadn't eaten anything with gluten for days.  Got tipped off a few days after while watching my cat drink out of my water glass.  That's where it came from!  Once this bag is gone, it's gluten free food for them also.  I also started drinking my water out of bottles with caps. Welcome to celiac kitties.

[ravenwoodglass]

Have you gotten any animals recently?  A lot (ok most) pet foods have gluten in them.  I got glutened one day and knew without a doubt that I hadn't eaten anything with gluten for days.  Got tipped off a few days after while watching my cat drink out of my water glass.  That's where it came from!  Once this bag is gone, it's gluten free food for them also.  I also started drinking my water out of bottles with caps. Welcome to celiac kitties.

Beth get that gluten-free cat food now and mix it in decreasing amounts with the food your cat's usually eat. That will make the transition to the new food easier on the kitty and prevent any tummy upset or hunger strikes by your kitty. 

[ravenwoodglass]

I am eating gluten free oats in Udi's Granola, yes.  And I stay away from most soy, but I do eat products with soy lecithin.  It's so hard to figure out if I have another food issue when I know my DGP antibodies were high, because I know that means I've been getting gluten as well.  

Drop the gluten free oats for bit and see if that helps. There are some of us who don't tolerate even certified gluten-free oats.