Fatigue, Poor Vision & Concentration, Muscle Soreness & Twitchiness (Neurological?) gluten-free for 2 Years

[DarthFlec]

Hi everyone,

I have been a long time visitor and appreciator of the support posts here, this is my first time posting. I was hoping to get feedback/advice from those who have experienced glutening-symptoms post gluten-free diet. I was diagnosed by my PCP 2 years ago with Celiac disease and have been on a strict gluten free diet for 2 years. Initially my symptoms (brain fog, fatigue, GI issues and soreness) went away and did so rather quickly after starting the gluten-free diet. 

Now I find myself 2 years in on a very strict gluten-free diet (no chances for cross-contamination as I don't eat out and my family eats nearly gluten free as well (with no shared pans etc) and have started to experience some very alarming symptoms. About 1 month ago I started to develop some rather severe loss of vision acuity (very difficult to focus as well as sensitivity to light) as well as some dramatic difficulty in mental concentration/thinking (similar to my old gluten-brain fog but not quite the same), feels almost like a 24-hour migraine. I wake up sore and fatigued every morning and the soreness doesn't go away (I have bags under my eyes that make me look like a zombie even though I get 8-9 hours of sleep each night). I've developed shaky hands and a feeling of fidgeting/restlessness in my muscles (arms, legs, even eyelids, just all over) as well as GI issues reminiscent of my gluten days have returned (gosh I forgot how un-fun those are) and I all around just can't seem to function. I've been on a strict elimination diet now for 2 weeks (no dairy or eggs, other grains, nightshades and other inflammatory foods such as soy, legumes etc. Pretty much an AIP diet) with no improvement.

My PCP has sent me to an allergist with no food allergies showing in a 91 point skin test. Next up I'm going to a rheumatologist and asking for testing for my vitamins/minerals as well as a referral to a neurologist or someone who can rule out MS/associated neurological autoimmune related diseases. I'm at a loss here and not sure what is causing the symptoms nor how to solve them.

I greatly appreciate any and all feedback and advice, and if anyone has happened to have similar symptoms long after going Gluten Free please do let me know what you discovered. 

Thank you.

[kareng]

I assume they have re-tested your blood Celiac antibodies?  

It seems like people with Celiac sometimes tend to blame every symptom or illness on celiac.  Unfortunately, we are just as likely to get other illnesses and conditions, as anyone else.  Sounds like you are pursuing other diagnoses.  

[DarthFlec]

Good point; I have not had my tTG-IgA re-tested since my initial diagnoses. I will definitely do that asap. 

I too am pretty convinced it's a new illness or perhaps some extreme deficiency that is somehow only manifesting now. It is my understanding that Celiac, being an autoimmune disease, dramatically increases one's chances of developing another autoimmune diseases. That's what I'm afraid of/leaning towards right now. 

Thank you.

[ravenwoodglass]

3 minutes ago, DarthFlec said:

Good point; I have not had my tTG-IgA re-tested since my initial diagnoses. I will definitely do that asap. 

I too am pretty convinced it's a new illness or perhaps some extreme deficiency that is somehow only manifesting now. It is my understanding that Celiac, being an autoimmune disease, dramatically increases one's chances of developing another autoimmune diseases. That's what I'm afraid of/leaning towards right now. 

Thank you.

Do have them run a full panel as well as your vitamin and mineral levels and inflammatory markers would also be a good idea. Your doctor may be able to just give you a script for the tests or call in the order. It is good to make sure nothing else is going on but checking if this is celiac related is IMHO the first thing you should rule out.

Think back to when this started. Did anything change around this time?  Think not jsut foods but also toiletries, home improvement projects or hobbies? New pet or new pet food? Did a regular script med change formulations? That can be done anytime with generics. 

Hopefully you will find the cause and be feeling better soon.

[Gluten-free-01]

DarthFlec, I agree that it’s a good idea to get tested for vitamin/mineral deficiencies. Some of the issues you have may be caused by magnesium deficiency, for instance. Especially this:

11 hours ago, DarthFlec said:

I've developed shaky hands and a feeling of fidgeting/restlessness in my muscles (arms, legs, even eyelids, just all over)

Given the symptoms you described, I suggest that you get tested for diabetes as well. Fatigue, loss of vision acuity, shaky hands, brain fog etc. can be signs of diabetes (Type 1/Type 2/Pre-diabetes).

Open Original Shared Link

Open Original Shared Link

There are several different tests available – fasting glucose test is the most common one but there are also other tests that can be used (HbA1c, Oral glucose tolerance test, C-peptide, GAD antibodies).

I hope you feel better soon.

[Ennis-TX]

The muscle soreness and a few of the other issues can associated with a Magnesium Deficiency, at EXTREMES it normally also has a odd kind of skin feeling were you feel needle pricks or rolling fire on your skin. Mildly and beginning  you normally are just tired, fogged, muscle aches, and cramp a lot especially in the mornings with your legs.   B-vitamins full spectrum is another issue of concern, and vitamin A. If your doing a full on AIP diet there is a high chance these could be deficient. I would suggest Stress & Energy by Liquid Health and the neurological support from them. 1 tbsp each 3 times a day I swear by these. On the magnesium depending on other symptoms. If you have D then Doctors best as it is easier on the gut. If you have C then you should look at Natural Vitality Calm and start off with 1/4tsp and slowly up your dosage over a week to the full dose or where you start to have looser more normal stools.

As others mentioned you should also go get your antibodies checked. Perhaps something snuck in, or one of your staples in your life has a contaminated batch, who knows could be a soap, shampoo, medicine, spice, condiment, beverage, etc.

[Victoria1234]

3 hours ago, Ennis_TX said:

The muscle soreness and a few of the other issues can associated with a Magnesium Deficiency, at EXTREMES it normally also has a odd kind of skin feeling were you feel needle pricks or rolling fire on your skin. Mildly and beginning  you normally are just tired, fogged, muscle aches, and cramp a lot especially in the mornings with your legs.   B-vitamins full spectrum is another issue of concern, and vitamin A. If your doing a full on AIP diet there is a high chance these could be deficient. I would suggest Stress & Energy by Liquid Health and the neurological support from them. 1 tbsp each 3 times a day I swear by these. On the magnesium depending on other symptoms. If you have D then Doctors best as it is easier on the gut. If you have C then you should look at Natural Vitality Calm and start off with 1/4tsp and slowly up your dosage over a week to the full dose or where you start to have looser more normal stools.

As others mentioned you should also go get your antibodies checked. Perhaps something snuck in, or one of your staples in your life has a contaminated batch, who knows could be a soap, shampoo, medicine, spice, condiment, beverage, etc.

Where is the best place to purchase the Liquid Health supplements? I saw them on amazon but didn't know if that was a good price.

[Awol cast iron stomach]

As other said rule out all the above then look for additional intolerance. Corn became my gluten "understudy". 

[DarthFlec]

Thank you all so much for the advice, it is immensely appreciated. This whole auto-immune journey is still relatively new to me, so having the recommendations of those who have walked this path before helps a ton.

My PCP seemed receptive to my concerns and ordered about a dozen blood tests including nearly all those mentioned in this thread. I began taking a sublingual vitamin B-12 and a much better multi vitamin (both from my local health food store) as well as magnesium and will be checking there this weekend for the liquid options mentioned. I don't know if it's just a placebo, but I feel like *maybe* I noticed a small positive improvement adding all these vitamins.

As my family has a long history of auto-immune disorders (psoriasis, diabetes, thyroid disorders, lupus and other more obscure ones) I'm nervous that it could be something new in the auto-immune family. Keeping fingers crossed for vitamin deficiencies and appreciative of everyones' support.

[ravenwoodglass]

3 hours ago, DarthFlec said:

As my family has a long history of auto-immune disorders (psoriasis, diabetes, thyroid disorders, lupus and other more obscure ones) I'm nervous that it could be something new in the auto-immune family. Keeping fingers crossed for vitamin deficiencies and appreciative of everyones' support.

If they haven't done so already make sure those family members know to get tested for celiac.

[DarthFlec]

18 minutes ago, ravenwoodglass said:

If they haven't done so already make sure those family members know to get tested for celiac.

Excellent point. I can't believe I've overlooked asking all my family that (I know many have been tested but probably not all) as well as being re-tested myself to see if I'm accidentally being exposed to gluten (such as through something as unexpected as shampoo etc as has been mentioned in this thread). Thank you

[Cking27]

On 9/8/2017 at 3:39 PM, DarthFlec said:

Hi everyone,

I have been a long time visitor and appreciator of the support posts here, this is my first time posting. I was hoping to get feedback/advice from those who have experienced glutening-symptoms post gluten-free diet. I was diagnosed by my PCP 2 years ago with Celiac disease and have been on a strict gluten free diet for 2 years. Initially my symptoms (brain fog, fatigue, GI issues and soreness) went away and did so rather quickly after starting the gluten-free diet. 

Now I find myself 2 years in on a very strict gluten-free diet (no chances for cross-contamination as I don't eat out and my family eats nearly gluten free as well (with no shared pans etc) and have started to experience some very alarming symptoms. About 1 month ago I started to develop some rather severe loss of vision acuity (very difficult to focus as well as sensitivity to light) as well as some dramatic difficulty in mental concentration/thinking (similar to my old gluten-brain fog but not quite the same), feels almost like a 24-hour migraine. I wake up sore and fatigued every morning and the soreness doesn't go away (I have bags under my eyes that make me look like a zombie even though I get 8-9 hours of sleep each night). I've developed shaky hands and a feeling of fidgeting/restlessness in my muscles (arms, legs, even eyelids, just all over) as well as GI issues reminiscent of my gluten days have returned (gosh I forgot how un-fun those are) and I all around just can't seem to function. I've been on a strict elimination diet now for 2 weeks (no dairy or eggs, other grains, nightshades and other inflammatory foods such as soy, legumes etc. Pretty much an AIP diet) with no improvement.

My PCP has sent me to an allergist with no food allergies showing in a 91 point skin test. Next up I'm going to a rheumatologist and asking for testing for my vitamins/minerals as well as a referral to a neurologist or someone who can rule out MS/associated neurological autoimmune related diseases. I'm at a loss here and not sure what is causing the symptoms nor how to solve them.

I greatly appreciate any and all feedback and advice, and if anyone has happened to have similar symptoms long after going Gluten Free please do let me know what you discovered. 

Thank you.

Have all those exact same symptoms that finally took me in for a ms testing. However at the same time two of my children got diagnosed with Lyme disease, when the doctor started talking to me about my health and why I had two children with this. He had me fill out a checklist and sure enough I had 66 out of 80 items only 20 requiring diagnosis of Lyme disease. When he showed me the bullseye rash sure enough I had been hospitalized for 2 weeks in europe and recognize the rash. What you have described as Lyme disease to a T. And if it does not get addressed quickly these will be long term and neuro degenerative of the nature

[icelandgirl]

Hi Darthflec...I'm so sorry that you are going through this...it sounds scary.  Wanted to send you a big ((((hug)))) and hope that you get answers soon.

You've gotten some great advice...retest antibodies, check for deficiencies, diabetes, lyme.  

Has your thyroid been checked recently?  Thyroid issues can affect the whole body.  A full panel would be good: TSH, free T3, free T4, TPOAb and TgAb...the last 2 are antibody tests.

Good luck to you and please keep us updated!

[DarthFlec]

Hi everyone, 

Thank you all again so much for your valuable feedback and recommendations. 

I just got my initial blood work back and everything came back normal (CBC, CMP, C-reactive protein, Thyroid markers, Sed rate, ron, Folate, Vitamin D & B12) however my ANA came back positive "Pattern: homogeneous Titer: 1:320".  I'm going to have some more auto-immune specific blood work done (such as the TPO & TGab as well as Immunoglobulins, C3 & C4) as well as being referred to an immunologist (and I'll definitely ask my doctor about Lyme disease).

I have read that ANA will test positive with *un-treated* Celiac disease, but has anyone tested positive with *treated* Celiac disease? (My Celiac blood panel came back 3, so it wasn't flagged as it was within normal range now. Was 70 first time I did the test 2 years ago). Anyone have related auto-immune diseases after/with Celiac and a positive ANA? 

Thank you again everyone for your help, it is greatly appreciated. 

[icelandgirl]

Hi Darthflec,

Did you get a copy of your results?  If so, thyroid ranges, as well as D and B12 are huge.  You can be within the normal range and still not be in a good spot.

For thyroid, you want your TSH close to 1 and your free T3 and free T4 in 50-75% of the range.  

I'm glad that your antibodies are being tested and hope you get something figured out soon!

[LexieA]

Hi,

I know this might be a side issue but could you be dehydrated? I've become more aware about my electrolyte balance and tend to have lower blood pressure so I need to drink plenty of water or broth or (homemade) juice plus lots of vegetables in a day to stay hydrated.  You probably already know but dehydration can cause dizziness, lightheaded feelings, fuzzy thinking, tiredness and if you are low on any of the main minerals - I know magnesium was discussed, I believe it can cause muscle cramping and soreness. Because I was eating almost all whole foods my doctor told me I was getting too little sodium, but also to drink lots of water. He said I needed both salt and water because water alone will not help your blood "fullness" (sorry that sounds a bit gross) but it helps regulate your blood pressure (mine gets too low sometimes). When I was eating commercial stuff I obviously got TONS of salt and then went to hardly any - only what was in fruit/veg. I'm not advising you to have more salt, but just that that whole electrolyte balance thing affects your entire system and keeps everything working together. In fact it's critical but something I often forget about. So if you've been outside a lot maybe, sweating more than usual, doing outdoor work or been sick and getting dehydrated or low in any of these minerals it can get out of whack.  That probably doesn't address all the symptoms you've described like digestion but I just though to mention it because it's easy to get into times when you're not drinking enough water.  Sorry if this is completely off track of what you are going through. Sorry you are having a hard time. I know how much that sucks.

----

Also I thought about there are seasonal allergies and mold, etc and when your body has to deal with some other load or stressor type thing it makes it harder for the immune system as a whole to deal with the other things. If your digestion is already having to heal that takes a lot of energy and if other systems are struggling I think it might affect that too. But, yeah, I'm not a doctor, lol, just a person dealing with this stuff for the past few years.

[DarthFlec]

On 9/15/2017 at 9:27 PM, icelandgirl said:

Hi Darthflec,

Did you get a copy of your results?  If so, thyroid ranges, as well as D and B12 are huge.  You can be within the normal range and still not be in a good spot.

For thyroid, you want your TSH close to 1 and your free T3 and free T4 in 50-75% of the range.  

I'm glad that your antibodies are being tested and hope you get something figured out soon!

 I did, thank you. My vitamin B12 was very high (probably from the sublingual vitamin B12 I had just started taking), my vitamin D was low (45 out of their range of 30-100), my TSH & T4 were in the levels you recommended (I guess they didn't test T3). I'm going to start boosting my vitamin D and keep fingers crossed for the additional blood work. Thank you!

[DarthFlec]

On 9/16/2017 at 9:20 AM, LexieA said:

Also  I thought about there are seasonal allergies and mold, etc and when your body has to deal with some other load or stressor type thing it makes it harder for the immune system as a whole to deal with the other things. If your digestion is already having to heal that takes a lot of energy and if other systems are struggling I think it might affect that too. But, yeah, I'm not a doctor, lol, just a person dealing with this stuff for the past few years.

 Think I'm good on dehydration (I drink a *ton* of water every day), but that was the first think my brother (a paramedic) asked when I told him how I was feeling. Definitely something important to always be aware of.

With regards to the allergies and related immune response I think that's spot on and directly related to what's going on. I (like a dummy) stopped taking my antihistamines early this year (normally I take them literally half the year), it seemed like a mild allergy season so I stopped a few months ago. I just re-started my antihistamines, nasal spray and am taking decongestants and using a Neti pot and have really noticed a positive improvement in my vision and eye pressure, a little less brain fog, as well as a "settling down" of my GI symptoms. Still very sore and tired, but perhaps a little less so.

Im wondering if I gave myself a bad case of sinusitis or even a frontal sinus infection that helped throw my whole body out of whack. My positive ANA markers I guess could be caused by infection but I'm still wondering if I caused a flare up of some other related autoimmune disease that was sort of sitting dormant in my body these past 2 years (the rheumatologist will answer that for me I hope).

Thank you

[Jmg]

10 hours ago, DarthFlec said:

With regards to the allergies and related immune response I think that's spot on and directly related to what's going on. I (like a dummy) stopped taking my antihistamines early this year (normally I take them literally half the year), it seemed like a mild allergy season so I stopped a few months ago. I just re-started my antihistamines, nasal spray and am taking decongestants and using a Neti pot and have really noticed a positive improvement in my vision and eye pressure, a little less brain fog, as well as a "settling down" of my GI symptoms. Still very sore and tired, but perhaps a little less so. 

Could some of your symptoms be related to antihistamine withdrawal? Did the doctor check your IGE levels?