Not feeling better yet

[mathieml]

My daughter was recently diagnosed with Celiac and has been gluten free since August 19th. However, she is still feeling very sick. She still has nausea constantly and it hasn't gotten any better.

We have been extremely careful about her diet. We check everything she eats for gluten. If I'm not sure about an ingredient or product, I google it to be 100% sure. I have cleaned out the kitchen and got her a new toaster. I threw away all cookware that looked cracked or scratched. The only gluten left in the house are a few baked goods for the rest of us that we are very careful with - we eat it on paper plates, wipe counter/table up immediately after, and wash hands after. We have also checked her medication, toothpaste, lipstick, lip gloss, hand lotion, shampoo and conditioner. We have been careful about eating out too. She has only eaten out 3 times, but each time we made sure the food was gluten free (the worker physically checked the ingredients with us).

The only possible way she could be getting glutened is from playing with our dog, who still has gluten in his food. But, that is unlikely, since she always washes her hands before eating.

Am I missing something? I'm starting to get really worried and she is frustrated.

Please help.

[cstark]

It will take some time for your daughter to be free of the gluten she has ingested before the diagnosis.  I had to go gluten free in Oct. of 2015 and still am having some symptoms of being glutened, though they have lessened over the past year.  I look forward to the time I have symptoms only when being accidentally glutened.  It is frustrating when you don't think things are getting any better, but as the body heals it also needs to detox (meaning getting rid of the poison).  Your daughter has just started the road to recovery, but don't despair because you and your daughter will eventually start to see the light at the end of the tunnel.  It is great that you are there to help her and to be supportive to her during this time of transition for her.  It is important that she has the support of her family because this is a scary, nasty, weird, and frustrating time for her.  Even if she does not want to talk about it, always let her know you are there for her.  My family was an awesome support system and still is.  This is also a great site to ask questions and to bounce ideas off others who have been there, so welcome to the forum.   Someone directed me to the "Newbie" link on the homepage.  Something to look at.

In reference to your question of missing something.  I know that sometimes for me stress, hormone fluctuation, certain chemicals in the air, and caffeine exacerbate the symptoms.  I am not sure how your daughter is, but it may be a good idea to cut out caffeine for a while to see if this helps.  For me, this was hard because I like my coffee at my office in the morning.  Instead, I drank decaf for a time.  I had to cut out dairy as well at the beginning and that did help.  I tend to still be sensitive to dairy even now when I get too much of it in my system, so now I limit how much dairy I eat. 

When everything went haywire back in October, I started going to a nurse practitioner who specialized in Healing Touch therapy.  I am not saying it work for everyone because everyone is different.  However, she was able to keep my systems in sync with each other while my body was healing from the gluten.  I still go on a regular basis for maintenance now, but really helped in the beginning.  Something to look into and research about.

The things that worked for me won't work for everybody, but I wanted to share with you what helped me throughout the whole process.  I will be praying for you and your daughter as you both journey time this together.  Let me know how it goes.

[kareng]

2 weeks isn't that long.  It can take months to years to fully heal.  

IN 2 weeks she has eaten out 3 times?  You might want to stop eating out for a few months.  Just because ingredients are gluten-free, doesn't mean the kitchen practices keep them gluten-free.  For example - fries should be gluten-free - oil, potatoes, salt.  However, due to kitchen practices, they rarely are gluten-free.  They cook other items that are coated in gluteny batter in the same oil.  Some of that batter stays in the oil and gets on the fries.  Ever gotten an onion ring piece in your fries?  A pizza place may take a gluten-free crust but the pizza cheese is glutened by the cooks hands from previous gluten pizzas.

 

[mathieml]

1 minute ago, cstark said:

It will take some time for your daughter to be free of the gluten she has ingested before the diagnosis.  I had to go gluten free in Oct. of 2015 and still am having some symptoms of being glutened, though they have lessened over the past year.  I look forward to the time I have symptoms only when being accidentally glutened.  It is frustrating when you don't think things are getting any better, but as the body heals it also needs to detox (meaning getting rid of the poison).  Your daughter has just started the road to recovery, but don't despair because you and your daughter will eventually start to see the light at the end of the tunnel.  It is great that you are there to help her and to be supportive to her during this time of transition for her.  It is important that she has the support of her family because this is a scary, nasty, weird, and frustrating time for her.  Even if she does not want to talk about it, always let her know you are there for her.  My family was an awesome support system and still is.  This is also a great site to ask questions and to bounce ideas off others who have been there, so welcome to the forum.   Someone directed me to the "Newbie" link on the homepage.  Something to look at.

In reference to your question of missing something.  I know that sometimes for me stress, hormone fluctuation, certain chemicals in the air, and caffeine exacerbate the symptoms.  I am not sure how your daughter is, but it may be a good idea to cut out caffeine for a while to see if this helps.  For me, this was hard because I like my coffee at my office in the morning.  Instead, I drank decaf for a time.  I had to cut out dairy as well at the beginning and that did help.  I tend to still be sensitive to dairy even now when I get too much of it in my system, so now I limit how much dairy I eat. 

When everything went haywire back in October, I started going to a nurse practitioner who specialized in Healing Touch therapy.  I am not saying it work for everyone because everyone is different.  However, she was able to keep my systems in sync with each other while my body was healing from the gluten.  I still go on a regular basis for maintenance now, but really helped in the beginning.  Something to look into and research about.

The things that worked for me won't work for everybody, but I wanted to share with you what helped me throughout the whole process.  I will be praying for you and your daughter as you both journey time this together.  Let me know how it goes.

Okay, thanks! I had hoped she would at least have a little relief by now, but we will give it more time.

She doesn't drink caffeine yet. She is 13 and although most of her friends drink coffee and caffeinated sodas, I have not allowed her to do that yet (I'm an overprotective Mom, I guess).

I'll look into the healing touch therapy. Thanks!

[kareng]

3 minutes ago, cstark said:

I   It is frustrating when you don't think things are getting any better, but as the body heals it also needs to detox (meaning getting rid of the poison).  

 

Actually, gluten isn't hiding somewhere to be washed out.  It goes out of the digestive system in a few days, just like any other food.  What takes time to go down are the antibody levels.  It appears that we may actually continue to make them for a few weeks after we stop eating gluten.  

[mathieml]

Does anyone have problems with popcorn? She has been eating a lot of popcorn because it has always been her favorite and it's gluten free. I have been encouraging it because it's full of fiber (she's constipated too), but maybe she's having too much?

[Irene Joanne]

I would suggest avoiding eating out for sure until you see more healing. You got rid of all your non stick pans? Cast iron pans can't be used either if they've had gluten.  Kids usually heal faster- it's been almost a year for me and I'm far from feeling well

[kareng]

Just now, mathieml said:

Does anyone have problems with popcorn? She has been eating a lot of popcorn because it has always been her favorite and it's gluten free. I have been encouraging it because it's full of fiber (she's constipated too), but maybe she's having too much?

I had a problem with it for a couple of months.  It is hard to digest and seemed to be"scratchy" to my system.  Not very scientific, just how it seemed to me.

 

Read the Newbie thread.  You may want to cut out dairy for a few weeks or months

[mathieml]

Just now, Irene Joanne said:

I would suggest avoiding eating out for sure until you see more healing. You got rid of all your non stick pans? Cast iron pans can't be used either if they've had gluten.  Kids usually heal faster- it's been almost a year for me and I'm far from feeling well

When I say she ate out 3 times, I mean anything outside of the house. Once we went for ice cream (I had the person get a new container, a new spoon, and I checked the ingredients). Another time she got popcorn at a movie theater (again checked the ingredients of all items used). The last time was at a restaurant that we looked up on "find me gluten free" that had 100% positive reviews from celiacs. I am very certain that she did not receive any gluten from eating out. But, we will avoid it going forward.

We didn't have any non-stick pans. Ours are ceramic. I did get rid of all cookware that had scratches (i.e. spatulas, silicone, etc.).

[mathieml]

5 minutes ago, kareng said:

I had a problem with it for a couple of months.  It is hard to digest and seemed to be"scratchy" to my system.  Not very scientific, just how it seemed to me.

 

Read the Newbie thread.  You may want to cut out dairy for a few weeks or months

Okay, thanks. I think it's the popcorn. She ate a whole bag yesterday and she eats it all the time. She's going to be sad about this.

I read the newbie thread several times already. lol I keep the ingredients list on my computer for easy searches when I'm not sure about a product.

[mathieml]

About the dairy...I have been giving her lactose free milk and she doesn't have much else for dairy. I am lactose intolerant and I get nausea right away and then get diarrhea later. My daughter doesn't seem to have the same type of reaction I do, so I don't think it's that. For those that are lactose intolerant, were you sick right after eating lactose, or did it take a few hours or days?

[Mandijoy]

Hello... i got dignoised July 11th... since then I found out I can't handle corn, garlic or dairy.... her stomic might be extra sensitive right now.... im not a doc but I have noticed with out those three foods I have felt better but I belive I might have to cut out more  good luck with you child!!! Its hard

[Babybop]

Hi,

Nausea was my #1 symptom too. It just takes a while to go away. It took until month 6 for me to be feeling almost completely normal.

It took a month for me to start having small periods of the day when I wasn't nauseous, and with time, I slowly added more time to the day without nausea.

But mostly I just want to say that you're doing everything right. Having supportive family is so so important because the change is huge and it's not easy. Just keep doing what you're doing and hopefully she'll get a little relief.

[ironictruth]

I had crazy trouble with popcorn before I went gluten-free the first time and have avoided it since. 

Nausea for me kicked in about 6 weeks ago. My endo put me on zinc to help and I was also given zofran but it makes me dizzy. 

I agree with the above folks, can going out to eat, stick to non-processed foods and if you have to get processed use certified gluten-free. 

I had continued eating out and eating processed and my stomach sensation slowly led to the pain and nausea. 

Good luck. 

[Celiacinthesea]

On ‎8‎/‎31‎/‎2016 at 11:45 AM, mathieml said:

When I say she ate out 3 times, I mean anything outside of the house. Once we went for ice cream (I had the person get a new container, a new spoon, and I checked the ingredients). Another time she got popcorn at a movie theater (again checked the ingredients of all items used). The last time was at a restaurant that we looked up on "find me gluten free" that had 100% positive reviews from celiacs. I am very certain that she did not receive any gluten from eating out. But, we will avoid it going forward.

We didn't have any non-stick pans. Ours are ceramic. I did get rid of all cookware that had scratches (i.e. spatulas, silicone, etc.).

I get very similar symptoms with diary. I went gluten and dairy free for this reason. My small bowel is so damaged, it can not tolerate dairy at all.

[GFinDC]

Hi mathieml,

Personally I think it's best to stick to whole foods while healing.  Dairy is a no-no too.  Many foods may cause reactions or digestive symptoms at first.  When your small intestine lining is damaged, it can't do it's job right.  Hormones from the small intestine also affect release of digestive juices from the gall bladder.  Also, the poor digestive process leads to an increase in bacteria and the gas/chemicals they produce.  So lot's of things get out of whack.  Simple foods are good, and easy to digest foods.  Popcorn is in the not easy to digest camp.  Many people have problems digesting even whole corn, so people started making hominy instead, which is easier to digest.

Your daughter's body needs vitamins and minerals to heal, but celiac damage makes it hard for them to be absorbed.  Vitamin pills may help, but make sure they are gluten free.  Myself I also avoid soy, as it is great for people to save money on their food products, but not so great for the people eating them.  There was a study a few years back that showed soy impaired normal maturity of intestinal cells in rats.

It is probably best to avoid most gluten-free processed foods for a while also.  Mission brand corn tortillas are gluten-free and may work for a bread substitute.  I've been ok eating La Banderita brand corn tortillas also.  I get them at Krogers supermarket chain.

Simple foods, whole foods, and real food like our great grandparents ate is good.  It takes time for the antibodies to subside in the body, so anytime a mistake is made it starts the damage/healing process all over.

Once the gluten-free diet becomes a habit (with some bumps along the way of course) it's not a bad thing.  Your daughter will probably be eating better, more nutritious foods than most people, and fewer chemical additives too.

[cyclinglady]

On August 31, 2016 at 2:57 PM, mathieml said:

About the dairy...I have been giving her lactose free milk and she doesn't have much else for dairy. I am lactose intolerant and I get nausea right away and then get diarrhea later. My daughter doesn't seem to have the same type of reaction I do, so I don't think it's that. For those that are lactose intolerant, were you sick right after eating lactose, or did it take a few hours or days?

If your daughter has lactose intolerance, it should hit fast (as the stomach empties) and resolve quickly (day o two) unlike a glutening which can last for days, weeks or months.  It can take months or years to recover from celiac disease.  Why?  The learning curve is steep for the gluten free diet.  As rookies, you and your daughter are going to make mistakes.  There will be set backs, but eventually, your daughter will get well and you will learn!  .  In six months (after her diagnosis)' ask your doctor for follow-testing to see if there is a downward trend in her antibodies.  This will tell you if you are doing  am good job at avoiding gluten.

(See my response to your lactose intolerance question....)

[mathieml]

On 9/3/2016 at 6:32 PM, cyclinglady said:

If your daughter has lactose intolerance, it should hit fast (as the stomach empties) and resolve quickly (day o two) unlike a glutening which can last for days, weeks or months.  It can take months or years to recover from celiac disease.  Why?  The learning curve is steep for the gluten free diet.  As rookies, you and your daughter are going to make mistakes.  There will be set backs, but eventually, your daughter will get well and you will learn!  .  In six months (after her diagnosis)' ask your doctor for follow-testing to see if there is a downward trend in her antibodies.  This will tell you if you are doing  am good job at avoiding gluten.

(See my response to your lactose intolerance question....)

Thanks. I am trying to avoid the setbacks and mistakes you mentioned that most newbie's make. I want her to heal as fast as possible. My family thinks I have developed a form of OCD because I am so obsessed with gluten now.

I read the newbie thread and did everything on there. I have cleaned the kitchen out. Gotten rid of all gluten aside from a couple of items that only I am allowed to handle and anyone that wants to eat them must sit in a specific spot and wash hands after. I got a new toaster and strainer. I only cut things on paper plates (no cutting board), which I then throw away. I examined all of our kitchen cookware and got rid of anything with scratches. I have obsessively checked every ingredient in every item I give her. If something doesn't say "gluten free," I check it online or with the manufacturer. I've replaced Mayo, butter, peanut butter, jelly...anything that might have been double dipped. I checked her toothpaste, medications, hand lotion, shampoo, conditioner and hand sanitizer. Her school offers a gluten free lunch, but we opted to just send her a bag lunch from home because I am afraid of contamination. We have not eaten out in over two weeks and when we did eat out back in the first few days after diagnosis it was at places that had 100% approval by celiacs on the "find me gluten free" app. She did have some cotton candy at the state fair last weekend, but it was at a booth that only sold cotton candy (nothing else) and I read the ingredients that they put in it myself.

I have taught my daughter to not eat anything friends offer her at lunch or when at friends houses. She brings snacks with her when she goes places so she doesn't have to chance eating something outside of the house.

The only possible way my daughter could get glutened is from our dog and I am in the process of switching him to a grain free dog food. I just have to do it really slowly (a bit more of the new food each day) because his stomach is so sensitive.

I think I did everything, but can anyone think of anything I am missing?

[cyclinglady]

It's good to be a little OCD when it comes to protecting your daughter's health!  It sounds like you are getting things down!  Now, you just need......time.  Avoid going out until her nausea is gone.  She is a kid though and needs treats.  I just baked some gluten-free Snickerdoodles for the family.  Yum!  I freeze them in little baggies and store them in a larger freezer container to keep them at their best.  I'm thinking about baking pumpkin bread for tomorrow.  I am craving it -- even though I know that summer here isn't over until after Halloween!   I also keep a batch of cupcakes in the freezer (hubby like spice cupcakes or carrot).  When we go to parties, we always have a treat (well, I'm diabetic, but a girl has to cheat on something! )  Man, my 17 cu/ft freezer has been an awesome investment!  

The dog food switch is a good thing too.  My dog thrived on Grain Free Dog Food (no gluten).  I lost my lab just last Friday.  She was 13 and the best lab anyone in my extended family every had (they all said so and she had the awards to prove it!).

 Anyway, it's great that you are supporting your daughter so much!  Keep it up, Mom!  

Oh....has anyone else been tested for celiac disease?  All first-degree relatives should be tested per the experts (e.g. University of Chicago's celiac website, etc.) 

 

 

[mathieml]

14 hours ago, cyclinglady said:

It's good to be a little OCD when it comes to protecting your daughter's health!  It sounds like you are getting things down!  Now, you just need......time.  Avoid going out until her nausea is gone.  She is a kid though and needs treats.  I just baked some gluten-free Snickerdoodles for the family.  Yum!  I freeze them in little baggies and store them in a larger freezer container to keep them at their best.  I'm thinking about baking pumpkin bread for tomorrow.  I am craving it -- even though I know that summer here isn't over until after Halloween!   I also keep a batch of cupcakes in the freezer (hubby like spice cupcakes or carrot).  When we go to parties, we always have a treat (well, I'm diabetic, but a girl has to cheat on something! )  Man, my 17 cu/ft freezer has been an awesome investment!  

The dog food switch is a good thing too.  My dog thrived on Grain Free Dog Food (no gluten).  I lost my lab just last Friday.  She was 13 and the best lab anyone in my extended family every had (they all said so and she had the awards to prove it!).

 Anyway, it's great that you are supporting your daughter so much!  Keep it up, Mom!  

Oh....has anyone else been tested for celiac disease?  All first-degree relatives should be tested per the experts (e.g. University of Chicago's celiac website, etc.) 

 

 

I'm so sorry to hear about your dog. It is so hard losing a pet.

My other daughter and myself have been tested and we were both negative. My husband keeps saying he will make an appointment, but he hasn't gotten it done yet. He doesn't have any of the symptoms, but I will keep on him to make sure.

I think my daughter's Celiac was triggered by the HPV vaccine. She had three doses of it last summer. I've read that the HPV vaccine is linked to autoimmune disorders. She was completely healthy and fine until a couple months after the last shot. I'm thinking about contacting a lawyer about this. What do you think?

[cyclinglady]

Oh, that's a tough one.  I do not recommend the HPV vaccine and that's just advice from a mother.  I am not a doctor.   My daughter was given a dose and had a seizure on the spot.   I hope that there are no long-term ramifications to the vaccine in her case.    As far as a lawsuit, I'm not sure you'd be able to pinpoint the vaccine on her celiac disease diagnosis.  Did it trigger it?  Maybe.  Maybe it was the flu, stress from school, whatever!  But it doesn't hurt to do a little research.  There's probably a class action lawsuit.  

I don't know what possessed me to allow her to get the vaccine.   I opted out of a few vaccines like the flu and the Hepatitis shot (the sexually transmitted version) when she was younger.    I guess it's because I always react negatively to so many drugs.  But the HPV?  Who knows why I said yes (I don't have HPV and have been tested when I once had a bad PAP but it was nothing...)

My heart goes out to you!  

[mathieml]

On September 8, 2016 at 5:12 PM, cyclinglady said:

Oh, that's a tough one.  I do not recommend the HPV vaccine and that's just advice from a mother.  I am not a doctor.   My daughter was given a dose and had a seizure on the spot.   I hope that there are no long-term ramifications to the vaccine in her case.    As far as a lawsuit, I'm not sure you'd be able to pinpoint the vaccine on her celiac disease diagnosis.  Did it trigger it?  Maybe.  Maybe it was the flu, stress from school, whatever!  But it doesn't hurt to do a little research.  There's probably a class action lawsuit.  

I don't know what possessed me to allow her to get the vaccine.   I opted out of a few vaccines like the flu and the Hepatitis shot (the sexually transmitted version) when she was younger.    I guess it's because I always react negatively to so many drugs.  But the HPV?  Who knows why I said yes (I don't have HPV and have been tested when I once had a bad PAP but it was nothing...)

My heart goes out to you!  

I had HPV, which led to precancerous cells that I had removed, so I thought I was doing the right thing getting her the vaccine. Now she is paying the price. After researching the vaccine, there appears to be a strong link to autoimmune diseases. I am 99% sure that was her trigger. plus, the timing matches up perfectly.