Still Having Trouble

[Nan2N]

I've been gluten free for over 2 months now and really not getting any better. I was wondering if anyone has had problems with their memory, cognitive functioning, and overall mental capacity still getting worse on a gluten free diet? I know I am being gluten free to the extreme. I research and check everything.

I never had any gut issues or food problems before I was diagnosed. Weight loss and a positive ANA clued the doc in.

I'm still looking for another underlying cause but am having trouble getting any doctors to take me seriously. I don't know where else to look or what other cause it could be and it's getting pretty scary.

I was given a crazy amount of different medication before diagnosis and I'm wondering if that could have tipped the scales and made me toxic. I've been reading about having to detox my body and don't even know where to start or who to call.

I'm also looking into Lyme...that may be a possibility.

If anyone could give me some input it would be greatly appreciated!!

[Fiddle-Faddle]

I'm sorry you are still having trouble.

It's good that you're looking into Lyme. You might also look into mercury toxicity (either from dental amalgam fillings or from vaccines), systemic yeast infections, and other food intolerances. There are also other bacterial infections that might attack the gut. Look up all the side effects of every med you were given and make a list.

Are you dairy free, too? Most of us had to go off dairy at least temporarily. And while your diet might be gluten free, is it healthy? (I'm assuming it is, just trying to cover all bases-- you wouldn't believe how many of us thought we could eat gluten-free breads, cakes, and cookies for every meal at first, and then wondered why our tummies hurt!)

Caffeine is another thing that does have an effect on neuro function. Have you recently either started or stopped with caffeine?

I hope you find answers soon.

[Nan2N]

I've been eating really healthy....except for the occasional treat. (Trying to gain weight)

Where would I get tested for food sensitivities? Everything seems to bother me now but only in a more "where'd my mind go" kind of way. I never had any kind of gut troubles before.

How about the mercury? I see an integrative MD but he's not really into doing all kinds of tests. He doesn't think I have a candida problem. It's really hard to find a good doctor to take me seriously and help. Any ideas?

I've been trying to see if I have a problem with lactose. So far I haven't had any problems. Would that affect my brain if it was an intolerance? This is all so confusing to me because my symptoms aren't like the majority. I feel sicker now being gluten free, but in a weird sort of nauseous all the time way. Everything I eat makes me feel queezy, but that's as far as it goes.

I really don't know how to start looking. I thought I'd be improving by now.

[mftnchn]

Also be sure to be checked thoroughly for malabsorption and vitamin/mineral deficiencies. These can cause neuro symptoms.

[ShayFL]

Im at about the same mark as you Nan. My neuro symptoms are up and down. Some progress and then I am thrown for a loop. Like you, I am pretty anal, so no CC. Although, I had some fruit from Whole Foods the other day that was "pre-sliced" and got bad neuropathy afterward. I concluded that it was sliced at the same time that they were mixing bread dough. It is a big open area and no walls between food prep areas. So I suspect CC. So no more sliced fruit. Only whole fruit that has been washed.

Also, gonna only shop in the later afternoon there. They bake early in the morning. Give it time for the gluten particles to settle. Or maybe pick a smaller local store that doesnt have a bakery. All grocery stores have bakeries here. So I have to get my produce somewhere. But thinking more and more how to avoid CC.

[ravenwoodglass]

Nan are you taking a lot of supplements? Many of us do when we are first diagnosed to try and make up for the deficiencies we have due to the disease process. Some of us may have difficulties with certain binders and some ingredients. Also if you are taking any homeopathic remedies many of those are formulated with gluten grain alcohols and because we are not supposed to react to them a naturopath or the maker may consider them to be safe. Many times they are not for folks that have neuro effects. If you did add a bunch at one time you might want to back off and then add them in one at a time to see if any are an issue.

The ataxia can take a long time to improve and unfortunately we often have to do completely zero tolerance for the ataxia to start to resolve. Depending on how long you have been ataxic you may or may not see complete resolution. I do have to say though that I suffered from ataxia that progressed pretty much unchecked for over 40 years. I have been gluten-free now for 5 and while I don't expect to ever be totally ataxia free most days I can walk unaided. It has been a struggle and it is hard to be patient.

One thing you may want to do is to ask your doctor for a refferral to a physical therapist. They can show you excercises and methods to increase your balance and make the disorder easier to deal with. When nerves get damaged sometimes certain excercises and movements, called if memory serves me 'patterning', can help the nerves either regrow or form different paths to overcome the damaged nerves. I was born with defects and partial paralysis in my legs and feet and after they did surgery when I was a child I had to learn how to walk 'normally'. They gave me the joy of dance as a young person, something I had never and would have never experienced without them. It was also a PT who nagged me into seeing an allergist when I had given up before diagnosis, she saved my life, literally. While I have had a lot of horrible experiences with doctors I have never had a bad experience with a PT. All I have dealt with have been very understanding, patient and even when doctors were saying everything was 'in my head' the PT's recognized that I was not 'putting on' my difficulties. If you can you may want to consider asking if you can see one.

One last note after rereading the thread, you asked about lactose but perhaps it is not the lactose but the casien. Milk protein may very well be hampering your improvement. Casien is harder to avoid than lactose, it is even present in many products that say they are dairy free. Unfortunately many of the dairy replacement products still contain casein. If you can removed dairy totally for at least a couple of months that may help you heal faster. You can always add it back in later when you have seen symptoms resolve and will be able to clearly see any ill effects.

[ShayFL]

"Patterning". I had physical therapy for a bit years ago to help with my disequilibrium. And one of the things the therapist told me to do was that whenever I made a movement that caused vertigo, to keep doing it until I no longer felt vertigous making that movement. It was so hard. But I did it. My first instinct used to be to panic if I felt vertigo, but now, I simply repeat whatever I was doing over and over and over again until it stops. It takes courage, but it has helped me a lot. So I may not be "cured" but I have rerouted things in my brain to help me function.

[Nan2N]

Nan are you taking a lot of supplements? Many of us do when we are first diagnosed to try and make up for the deficiencies we have due to the disease process. Some of us may have difficulties with certain binders and some ingredients. Also if you are taking any homeopathic remedies many of those are formulated with gluten grain alcohols and because we are not supposed to react to them a naturopath or the maker may consider them to be safe. Many times they are not for folks that have neuro effects. If you did add a bunch at one time you might want to back off and then add them in one at a time to see if any are an issue.

The ataxia can take a long time to improve and unfortunately we often have to do completely zero tolerance for the ataxia to start to resolve. Depending on how long you have been ataxic you may or may not see complete resolution. I do have to say though that I suffered from ataxia that progressed pretty much unchecked for over 40 years. I have been gluten-free now for 5 and while I don't expect to ever be totally ataxia free most days I can walk unaided. It has been a struggle and it is hard to be patient.

One thing you may want to do is to ask your doctor for a refferral to a physical therapist. They can show you excercises and methods to increase your balance and make the disorder easier to deal with. When nerves get damaged sometimes certain excercises and movements, called if memory serves me 'patterning', can help the nerves either regrow or form different paths to overcome the damaged nerves. I was born with defects and partial paralysis in my legs and feet and after they did surgery when I was a child I had to learn how to walk 'normally'. They gave me the joy of dance as a young person, something I had never and would have never experienced without them. It was also a PT who nagged me into seeing an allergist when I had given up before diagnosis, she saved my life, literally. While I have had a lot of horrible experiences with doctors I have never had a bad experience with a PT. All I have dealt with have been very understanding, patient and even when doctors were saying everything was 'in my head' the PT's recognized that I was not 'putting on' my difficulties. If you can you may want to consider asking if you can see one.

One last note after rereading the thread, you asked about lactose but perhaps it is not the lactose but the casien. Milk protein may very well be hampering your improvement. Casien is harder to avoid than lactose, it is even present in many products that say they are dairy free. Unfortunately many of the dairy replacement products still contain casein. If you can removed dairy totally for at least a couple of months that may help you heal faster. You can always add it back in later when you have seen symptoms resolve and will be able to clearly see any ill effects.

Thanks for the info! I don't think I have ataxia. I don't have balance problems just extreme problems with memory and concentration. My brain was always sharp and since diagnosis it's been getting worse and worse. It feels like only half my brain is working and I can't figure out what is going on. I'm even having trouble communicating verbally. Not to mention my hair loss just keeps going and going.

I wouldn't even begin to know what to do about finding out what food intolerances I have. Up to diagnosis I didn't have any reactions to anything. Milk never bothered me.

I was put on quite a few supplements...all gluten free. But I've been off them (to check if they were causing a reaction) for almost a week now and I don't see any difference.

Some days are worse and I don't know what's getting me.

How would you know how much of your intestines are damaged if the biopsies came back negative? What my doctor could visually see didn't look damaged either. I don't know how bad it is or has to be to cause the symptoms I'm having. My intestines never even gurgled until going gluten free.

If my brain issues are from Celiac what do I do to clear this up, or make it stop? I really am being so careful. I can't afford to lose anymore brain function!!!

Thanks

[aikiducky]

Memory and concentration problems and difficulty with finding words are in my case symptoms of either a glutening or of getting casein (milk protein).

You could try cutting out all traces of dairy for a while to see if it helps.

What also has helped me a great deal are a vitamin B complex (not only B12 but all the B's) and a fish oil supplement.

What also has helped is time, much more time than two months. So that's also something top keep in mind, if you have severe deficiencies and damage it wouldn't be strange if it takes more then two months to get better.

Maybe you could post what your typical daily diet looks like, and exactly what supplements you're taking, someone might have ideas?

I don't know if other problems, like thyroid problems for example, would give this kinds of symptoms, but maybe someone will chime in who knows.

Pauliina

[Nan2N]

Memory and concentration problems and difficulty with finding words are in my case symptoms of either a glutening or of getting casein (milk protein).

You could try cutting out all traces of dairy for a while to see if it helps.

What also has helped me a great deal are a vitamin B complex (not only B12 but all the B's) and a fish oil supplement.

What also has helped is time, much more time than two months. So that's also something top keep in mind, if you have severe deficiencies and damage it wouldn't be strange if it takes more then two months to get better.

Maybe you could post what your typical daily diet looks like, and exactly what supplements you're taking, someone might have ideas?

I don't know if other problems, like thyroid problems for example, would give this kinds of symptoms, but maybe someone will chime in who knows.

Pauliina

Hi Pauliina

Thanks for the info.

How would I know if there's casein in something? I'm so overwhelmed with the things I can't eat and I need to eat a lot because I am very underweight.

I eat different things every day but this brain stuff is always there. Some days are worse so I figure those days I may have gotten some. Can never figure out from where though.

I've had my thyroid and just about everything else checked. Everything comes back normal.

I just need to make some improvement before I go crazy!!!

[Fiddle-Faddle]

I agree--can you post a typical day's worth of everything that goes in your mouth, including meds? Not trying to be nosy here, trying to pin down what might be causing you problems. With so many of us here, with so many different perspectives, somebody's bound to notice SOMETHING!

One other thing hits me--a few people here have had terrible troubles with mold in their house. You're not dealing with that, are you?

[ShayFL]

Please post your Thyroid labs. What many doctors call "normal" is not!!! I went through many doctors before I found my current one, who looked at my labs and then talked to me before she declared, "You are hypothyroid". All labs were "normal". How did she know? By listening to the patient. Imagine that!! She could also see that while my Free T-3 was "in range" it was at the very bottom and the same for my Free T-4. Armour has changed my life. It didnt cure everything. It couldnt take the gluten out of my diet, but it sure helped with my hairloss, kinky weirdo hair spots, dry skin, fatigue, extreme muscle twitching, freezing all of the time and few other things.

And I am underweight too. One doctor told me I could not possibly be hypothyroid cuz I was skinny and not constipated. See......it isnt so simple. You cannot take your doctors word for it that all is "normal" on your labs.

GET A COPY of all of your labs!!! It is your legal right. Then let us know. We can help.

[mftnchn]

I agree with these posters, and also be sure you are using Igenex for your lyme blood tests and post your results on the forum in the lyme disease thread. Many are told theyare not positive who actually are.

[MyMississippi]

Some other things that can cause neuro and cognitive problems -----

Fibromyalgia

Multiple sclerosis--

[CuriousOne]

You probably still need more months to heal your villi if thats the cause of your issues.

Since I've started taking large doses of B6/zinc (plus some magnesium and sublingual B12)... I feel way better mentally... kinda like taking an SSRI is how it feels to me in some ways.

I find personally dairy "seems" to make a difference...although its kinda subtle. It doesn't make me depressed in the way that gluten does... but it makes me feel very like... apathetic/numb/etc...

You may have a leaky gut because of the gluten, combined with not enough food enzymes to digest the dairy proteins (because of the lack of villi-where the enzymes come out (if i'm right about that)) .. so what is happening is you are intaking through your leaky gut undigested morphine-like dairy proteins...

That is just from what I have read on the net and here.

So try eliminating dairy. It may be easier to get on a high dose of B vitamins. Read my sig its what works for me. It was really hard to get off dairy before getting my serotonin in line (from the B vitamins"... because i was addicted to the opiate effect of dairy... it helped me stay more calm but at the expense of my mental functioning it seemed.

Ahhh its all such a big mess...but I do feel better now.

Hope that might help.

[aikiducky]

How would I know if there's casein in something? I'm so overwhelmed with the things I can't eat and I need to eat a lot because I am very underweight.

This list could be a start: Open Original Shared Link

The easiest way to do it if you want to run a trial of a couple weeks is to concentrate on fresh fruit and veggies, meat, fish, some carb like rice or corn, olive oil, no seasoning mixes but single herbs and spices that you mix yourself. Cook as much from scratch as you can. That way you don't need to deal with any mystery ingredients. Don't try to eat low fat. You need the calories, and your brain needs the fats.

Pauliina

[Joni63]

Hi Nan,

The first few months for me were horrible. I had so many wierd symptoms - cold sores, gurgly stomach, severe double vision disturbance that lasted 3 weeks, light headedness, headaches, forgetfulness, and aches and pains. Everything got worse before getting better and has taken several (I'm on month 10 now) months. One reason could be just that your body is adjusting to the gluten free diet. It really does take time and it's a huge change for us to handle.

You also might want to consider getting your vitamin and mineral levels checked...All B's, B12, D, E, K, A, folate, magnesium, calcium, and iron including serum ferritin. My CBC test looked normal and my GI doctor dismissed any of my problems as being related to Celiac. I went back to my PCP and she ordered some tests and found D and serum ferritin to be extremely low. I have been supplement now for about 6 weeks and feel so much better than I did when I first went to her. I was honestly desperate and started having aches so bad in my legs I could barely walk and fatigue so bad and I would take several naps during the day. And I was also forgetful and just not functioning mentally. I had been gluten free for about 6 months, and this was definately the worst I had ever felt.

One thing that causes hair loss is low serum ferritin. Thyroid also causes hair loss problems. I think lyme does too (not positive though)

Always get copies of your tests from your doctors. You can take those results to other doctors without repeating the same tests if you are looking for another opinion. If your current doctor isn't helping you, find another. It's not right to feel as you do and there must be something that you are either reacting to or your vitamin levels need a boost or your thyroid could be acting up.

It may take some time to find out, but keep searching out a doctor until you find one that will help you.

Hope you feel better soon.

Joni