Is It Normal....

[KiwiBrit]

....to still have symptoms after following the gluten free diet for 4 weeks?

I am still getting numbness in my hands and feet and headaches. Compared to what I had 4 weeks ago, its lovely.

Thanks for any information.

-Michelle

[mushroom]

Yes, Michelle, it is perfectly normal. In fact, it would be abnormal to have completely recovered by now. Healing can go on for years - just look at all the improvement that might be ahead of you And neurological symptoms take longer to resolve than GI symptoms. You are on the right track - keep up the good work.

[Lisa]

Yes, Michelle, it is perfectly normal. In fact, it would be abnormal to have completely recovered by now. Healing can go on for years - just look at all the improvement that might be ahead of you And neurological symptoms take longer to resolve than GI symptoms. You are on the right track - keep up the good work.

Yes, so true! Mushroom always offers great advise.

[KiwiBrit]

Yes, Michelle, it is perfectly normal. In fact, it would be abnormal to have completely recovered by now. Healing can go on for years - just look at all the improvement that might be ahead of you And neurological symptoms take longer to resolve than GI symptoms. You are on the right track - keep up the good work.

Phew!

I was beginning to wonder if I was getting gluten, but couldnt figure out how. I am writing down everything I eat. To help with possible contamination. I email or call on anything new I eat. Im so worried about getting sick again.

I also have canker sores in my mouth, more on my tongue and my teeth are really sensitive. Is this also normal?

I REALLY appreciate your help. I feel quite lost in this huge gluten world.

[Lisa]

Phew!

I was beginning to wonder if I was getting gluten, but couldnt figure out how. I am writing down everything I eat. To help with possible contamination. I email or call on anything new I eat. Im so worried about getting sick again.

I also have canker sores in my mouth, more on my tongue and my teeth are really sensitive. Is this also normal?

I REALLY appreciate your help. I feel quite lost in this huge gluten world.

Have you checked your cosmetics or lip balms, lotions, shampoos....etc. Any thing that can enter your mouth must be gluten free. Do you share a toaster, scratch pots and pans?

It does tend to be quit an overload in the beginning....but, you will get the hang of it in no time. Hang out here and it will ease your tradition, because we have all walked in your shoes.

[mushroom]

Okay, so we've got a KiwiBrit living in Maine, who loves to travel (I guess we could have figured that part out). I have trod that path before you, but never been to Maine. Are you by any chance living with glutenous gluttons who share their crumbs freely with you, who contaminate your pots and pans, who litter food all over the living room? Or are you lucky enough to have a place (or a partner ) you can control when it comes to gluten? This can make a big difference in the amount of cross-contamination you are exposed to, and your attempts to eat clean.

Toasters and colanders/strainers are two of the things it is almost impossible to clean no matter how much scrubbing you do. Most stainless or aluminium cookware can be cleaned just fine but scratched nonstick you should buy your own pan that is off limits (even if you have to keep it in your room under your bed ) to everyone else. Cast iron (in the event you have been lugging that around the world ) can be cleaned by leaving it in the oven on the cleaning cycle (if you have such an oven) and then reseasoning.

Just fire away with any specific questions you have. We are here to help.

[pain*in*my*gut]

Phew!

I was beginning to wonder if I was getting gluten, but couldnt figure out how. I am writing down everything I eat. To help with possible contamination. I email or call on anything new I eat. Im so worried about getting sick again.

I also have canker sores in my mouth, more on my tongue and my teeth are really sensitive. Is this also normal?

I REALLY appreciate your help. I feel quite lost in this huge gluten world.

I have a lot of neuro symptoms as well that have not resolved, but I am only 2 weeks on the diet. I have heard that it can take many months to improve, so I am right there with ya!

Have you noticed any improvement, even a tiny bit? I think I have less tingling in my feet, and my balance seems a little better. So I think I am headed in the right direction (no pun intended...)

[ravenwoodglass]

You may want to take some high level gluten-free B vitamins including a sublingual B12. I use the Stress level B's which are high in the Bs and C. Your body will have trouble absorbing B12 from a swallowed vitamin so a sublingual is needed. Those will help the nerves heal a bit faster.

[KiwiBrit]

You may want to take some high level gluten-free B vitamins including a sublingual B12. I use the Stress level B's which are high in the Bs and C. Your body will have trouble absorbing B12 from a swallowed vitamin so a sublingual is needed. Those will help the nerves heal a bit faster.

Thank you!

[KiwiBrit]

I have a lot of neuro symptoms as well that have not resolved, but I am only 2 weeks on the diet. I have heard that it can take many months to improve, so I am right there with ya!

Have you noticed any improvement, even a tiny bit? I think I have less tingling in my feet, and my balance seems a little better. So I think I am headed in the right direction (no pun intended...)

Yes, I have had a lot of my symptoms go away in the past 4 weeks. I guess I just want them ALL gone, yesterday.

[KiwiBrit]

Okay, so we've got a KiwiBrit living in Maine, who loves to travel (I guess we could have figured that part out). I have trod that path before you, but never been to Maine. Are you by any chance living with glutenous gluttons who share their crumbs freely with you, who contaminate your pots and pans, who litter food all over the living room? Or are you lucky enough to have a place (or a partner ) you can control when it comes to gluten? This can make a big difference in the amount of cross-contamination you are exposed to, and your attempts to eat clean.

Toasters and colanders/strainers are two of the things it is almost impossible to clean no matter how much scrubbing you do. Most stainless or aluminium cookware can be cleaned just fine but scratched nonstick you should buy your own pan that is off limits (even if you have to keep it in your room under your bed ) to everyone else. Cast iron (in the event you have been lugging that around the world ) can be cleaned by leaving it in the oven on the cleaning cycle (if you have such an oven) and then reseasoning.

Just fire away with any specific questions you have. We are here to help.

Thank you. I really appreciate ANY and ALL help.

I do live with my husband and 2 children (5 & 8). I am the only one living gluten-free. I was told to test them both, but dont see a need at this point. If they start showing symptoms then I definately will.

[ravenwoodglass]

Thank you. I really appreciate ANY and ALL help.

I do live with my husband and 2 children (5 & 8). I am the only one living gluten-free. I was told to test them both, but dont see a need at this point. If they start showing symptoms then I definately will.

Since celiac can impact everything from growth to behavior and learning you do want to have them tested every couple of years whether you think they have symptoms or not.

[Twinklestars]

Yes, definitely get your kids tested. Some people never show any symptoms of celiac, but there is still damage being done inside.

It's hard work navigating this path in the beginning. I've only been gluten free a couple of weeks. Everyone here understands what it's like and what you're going through, that's what makes this forum so terrific. We're all here with you.

[KiwiBrit]

Since celiac can impact everything from growth to behavior and learning you do want to have them tested every couple of years whether you think they have symptoms or not.

Oh man. I will call their Dr 2moro and see what they say.

They are terrified of having blood drawn.

[kareng]

Oh man. I will call their Dr 2moro and see what they say.

They are terrified of having blood drawn.

Stick a big sucker/ lollipop in thier mouth right before the blood draw. Also, give them some extra juice or milk for a day or 2 before the blood draw. Then some juice or chocolate milk before the appointment. My SIL draws blood for her job & these are her suggestions for the easiest blood draw.

I used to work at a Children's hospital, kids crying for a blood draw are healthy kids. Mom, please think of that so you don't make them more scared. Kids who don't cry are usually very sick or a kid who really loves his lollipop.

[JMJKer]

Hi,

This is my first post, my questions seem to fit in most with "is it normal..." I had been diagnosed with Celiac six months ago and have been doing my best to be gluten free ever since. None of my initial symptoms have gotten better, in fact they seem worse to me now. I know it takes a while to heal, but I am wondering if I am still ingesting gluten some how. There is so much to learn. I have a very busy house, five kids and a husband who have all tested negative, so it's just me eating gluten free. My symptoms are all about bloating and gas in the mornings, and after I eat. Is it truly possible to live in a gluten household and remain gluten free? I do all the cooking, have my own toaster...should I feel this terrible after six months? How will I know if it is the healing time or my diet?

any help would be appreciated

[Lisa]

Hi,

This is my first post, my questions seem to fit in most with "is it normal..." I had been diagnosed with Celiac six months ago and have been doing my best to be gluten free ever since. None of my initial symptoms have gotten better, in fact they seem worse to me now. I know it takes a while to heal, but I am wondering if I am still ingesting gluten some how. There is so much to learn. I have a very busy house, five kids and a husband who have all tested negative, so it's just me eating gluten free. My symptoms are all about bloating and gas in the mornings, and after I eat. Is it truly possible to live in a gluten household and remain gluten free? I do all the cooking, have my own toaster...should I feel this terrible after six months? How will I know if it is the healing time or my diet?

any help would be appreciated

Hi and Welcome!

After six months on the gluten free diet, you should have noticed some improvement. Have you eliminated dairy? After the gluten is removed, you might notice other issues. Lactose intolerance can mimic symptoms. Often time, dairy can be reintroduced, successful.

Have you checked your toiletries and medications. With lots of kids in your house, are you mindful of "double-dipping" into the peanut butter, butter or mayo.

Other than that, I would recommend keeping a food diary that can help you isolate the culprit.

[mushroom]

Hi,

This is my first post, my questions seem to fit in most with "is it normal..." I had been diagnosed with Celiac six months ago and have been doing my best to be gluten free ever since. None of my initial symptoms have gotten better, in fact they seem worse to me now. I know it takes a while to heal, but I am wondering if I am still ingesting gluten some how. There is so much to learn. I have a very busy house, five kids and a husband who have all tested negative, so it's just me eating gluten free. My symptoms are all about bloating and gas in the mornings, and after I eat. Is it truly possible to live in a gluten household and remain gluten free? I do all the cooking, have my own toaster...should I feel this terrible after six months? How will I know if it is the healing time or my diet?

any help would be appreciated

No, you should have noted some improvement in six months, although as Lisa says, the healing process does take a while. Also the elimination of milk and lactose-containing products is very important, because until you heal your ability to digest lactose will be impaired.

If you are the only gluten free eater in your household, then the issue of cross-contamination is very real, especially if your children are small, and especially if you continue to bake/cook for them using regular flour. Just flour particles in the air falling on surfaces in the house would be sufficient to contaminate you. And then you have the gluten eaters using all the door handles and drawer pulls without washing their hands and small children dropping crumbs everywhere, giving gluteny kisses.. Does your partner brush his teeth before you kiss him? There are endless ways for you to be glutened if your household is not gluten free. The easiest way to handle a mixed household is to carve out gluten free zones - a high shelf in both the pantry and the fridge for you, a gluten free zone on the counter (or always use a paper towel or plate under your food), a regular handwashing schedule after eating (before - for you), etc. And don't use any gluten flour in your kitchen.

[JMJKer]

Hi and Welcome!

After six months on the gluten free diet, you should have noticed some improvement. Have you eliminated dairy? After the gluten is removed, you might notice other issues. Lactose intolerance can mimic symptoms. Often time, dairy can be reintroduced, successful.

Have you checked your toiletries and medications. With lots of kids in your house, are you mindful of "double-dipping" into the peanut butter, butter or mayo.

Other than that, I would recommend keeping a food diary that can help you isolate the culprit.

Thank you so much for your reply.

I was found to be lactose intollerant in my initial testing so I switched to the lactose free milk, I still eat cheeses like old cheddar and parmesean. I have heard that you shouldn't get rid of lactose entirely so your body will know you still need it. I can try to be more strict with the lactose. How long should it take to be able to tolerate it again?

I am very mindful of double-dipping, I have my own jars. Can you be confident in a food product as long as it does not list any sources of gluten? Or do you need to phone the manufacturer for eveything?

I feel like I am on my own here, after the diagnosis I met with a dietitian, but that was useless. I have read many books and searched the internet, but I still am not confident because of these continued symptoms! I wonder if is has been lactose intollerance all along(brought on by celiac) that had been giving me problems. It is so nice to have advice from experienced ones!

[JMJKer]

No, you should have noted some improvement in six months, although as Lisa says, the healing process does take a while. Also the elimination of milk and lactose-containing products is very important, because until you heal your ability to digest lactose will be impaired.

If you are the only gluten free eater in your household, then the issue of cross-contamination is very real, especially if your children are small, and especially if you continue to bake/cook for them using regular flour. Just flour particles in the air falling on surfaces in the house would be sufficient to contaminate you. And then you have the gluten eaters using all the door handles and drawer pulls without washing their hands and small children dropping crumbs everywhere, giving gluteny kisses.. Does your partner brush his teeth before you kiss him? There are endless ways for you to be glutened if your household is not gluten free. The easiest way to handle a mixed household is to carve out gluten free zones - a high shelf in both the pantry and the fridge for you, a gluten free zone on the counter (or always use a paper towel or plate under your food), a regular handwashing schedule after eating (before - for you), etc. And don't use any gluten flour in your kitchen.

Thank you so much for your reply,

I only use gluten-free flour in my baking, and I do the paper towel under any food I microwave. I have my own toaster. Something I thought of...we bought a new dishwasher and it was leaving residue on the glasses etc..could those particles contain gluten? Ahhhh!

My kids range from 15-4, most of them are really careful...but we need to keep an eye on that four year old! I just don't know how far to take all this. I am going to try to cut out lactose and see if that helps. thanks again!

[mushroom]

You may still be able to tolerate hard cheese, but a trial period without any dairy at all will tell you whether dairy is at the base of your problems. The time for healing of the villi in the small intestine varies for everyone and you will just need to find out your own healing time is and the ability to deal with lactose. I would put a paper towel or plate under any food I put on the counter too. Do you keep a separate non-stick skillet for your own cooking (if what the family are eating isn't inherently gluten free?) - something that isn't contaminated. Dishwashers are seldom sources of contamination as long as you keep them cleaned out. You may need new rinsing agent to combat that residue?

Yes, four-year-olds are a wee bit young for the total concept of what it takes to keep mommy safe. But in a year or two he will get the hang of it.

[ravenwoodglass]

Thank you so much for your reply,

I only use gluten-free flour in my baking, and I do the paper towel under any food I microwave. I have my own toaster. Something I thought of...we bought a new dishwasher and it was leaving residue on the glasses etc..could those particles contain gluten? Ahhhh!

My kids range from 15-4, most of them are really careful...but we need to keep an eye on that four year old! I just don't know how far to take all this. I am going to try to cut out lactose and see if that helps. thanks again!

Your issue may not be lactose, the milk sugar, but instead may be casien, the milk protein. You might want to drop dairy entirely for a bit and see if it helps.