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GFhopeful

Missed Diagnosis Or Still Recovering?

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Hi. I have been diagnosed (I guess) in late May '07. I was hospitalized for dehydration, rapid weight loss, and my heart rate would not slow down. Anyway, during the hospital stay I was given many many different tests (heart, brain, blood, GI) and what they came up with was low potassium and then several days after I was released the GI doc called saying I needed more work as the biopsy they took showed "blunting of the villi" in my small intestine, which he said "might" mean I have Celiac. The bloodwork that followed was all negative but I started gluten-free diet right away and it did seem to help.

So now I am definitely gluten-free. But I guess I am still concerned about some of my remaining symptoms. If I had not read some of the postings on this site, I would be VERY concerned still but it seems as if there are others with the type of symptoms I have. What I am left with is upper abdominal pain (but not that bad), some crazy twingy headaches, pains all over the body, weakness, muscle twitching, jerks that wake me up out of naps and sleep, and whenever I stand up my heart rate goes high. I have been gluten-free since late May but did originally make some rookie mistakes in the first couple of weeks or I'm assuming that's what happened because I was bedridden with dizziness and headaches for days when I was eating gluten-free but not careful of cc and eating store-bought gluten-free food. Now I am eating fresh meats fruits and veggies, no dairy either, per this board's suggestions.

So, in your opinion, do these remaining symptoms seem Celiac related? Do I still need to give it more time? How did you find acceptance of the Celiac diagnosis as THE problem? Should my next medical-type visit be to a herbalist or naturopath or a neurologist? And does the severity of the reactions to gluten lighten up after a while or is it what it's like from now on. I just can't believe that something I ate everyday for my whole life is now making me react some miserably and violently - I just can't wrap my brain around it still. Thanks for any insight!


Liz

Dianosed "possible Celiac" May '07 per biopsy with blunted villi

Bloodwork negative

Gluten-Free since June '07

Do NOT have Celiac genes per GI doctor

2 kids, 3 y.o. girl and 19 month old boy

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Wow, that's a tough one. At least your GI has actually heard of celiac!

What does he say about your continued symptoms? And what exactly has improved since going gluten-free?

If I were in your shoes, I would talk first to the GI, as he has your history and saw you before you went gluten-free, which presumably means he has some basis for comparison. I would then schedule an appointment with a naturopath AND a neurologist (or whatever other specialist the GI suggests, unless it's a psychiatrist!).

I'm sure some of the resident experts on this board will also have good suggestions about other possibilities, which include Lyme disease, mercury toxicity, other food intolerances, and other things, I'm sure.

Best of luck, and please keep us posted.

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Thanks for the questions. My regular doctor and GI are just like, "Oh, really, that's strange" when I mention remaining symptoms. I don't think either of them think that headaches, jerks, etc are Celiac related but just don't know what else to do besides to refer to neuorlogist. But all of the remaining symptoms have improved since going gluten-free as they happen less often and I can get out of bed and function in some capacity in life (before gluten-free I was unable to leave my bed for like 4-5 days after these "episodes"). I am very thankful for the improvements and for this board but don't want to miss something else that may be underlying.


Liz

Dianosed "possible Celiac" May '07 per biopsy with blunted villi

Bloodwork negative

Gluten-Free since June '07

Do NOT have Celiac genes per GI doctor

2 kids, 3 y.o. girl and 19 month old boy

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If you've only been gluten-free since late May and were still getting contamination for part of that time, I'd give it more time and continue being dilligent, as you are now. It can take time to heal.

If after a few months of totally gluten-free, I would look for what else it could be. You did the damage to the villi over a long period of time, it's going to take some time to heal.

There are other systemic diseases that can cause your symptoms, but with the positive biopsy such a short time ago, I think you need to give it time to heal before you start looking for something else.

Be sure you're safe though ... run this by your doctor.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Untreated celiac disease means malabsorption. Deficiencies in many nutrients is the result. Some of these deficiencies cause neurological symptoms. These include migraines and brain fog. Folic acid and B12 deficiencies can contribute to seizures which are simliar to epilepsy. The confusion which follows that can be very troublesome, while you try to convince the authorities that you are not epileptic.


Peter

Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000. I was retested five years later and the biopsy was normal. You can beat this disease!

Type 1 (autoimmune) diabetes diagnosed in March 1986

Markham, Ontario (borders on Toronto)

Celiac.com - Celiac Disease Board Moderator since 2007

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I've read some threads here where people discuss the neurological symptoms, apparently they are more frequent with certain gene types, too. You might do a search and see what you can find.

Since everything has improved, it seems to me that the best thing is to stick with what is working and see what unfolds. Remember it takes 1-2 years for the gut to heal so it makes sense that symptoms would persist. I have noticed people here who had no noticeable improvement until 3 mo, 9 mo or even 1 year after going gluten free but eventually really improved. That encourages me to stick with it, even though at two months plus I am worse instead of better. :huh:


4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

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I do remember reading something about gluten-induced epilepsy...try googling it and see what pops up.

I do know that it's not seizures I'm experiencing as when I was in the hospital, when they were happening the most, they gave me an EEG, which looks for seizures, and said that they weren't seizures. So that's good. I think the jerks are called myclonic jerks but why they started happening so often, maybe Celiac cause?


Liz

Dianosed "possible Celiac" May '07 per biopsy with blunted villi

Bloodwork negative

Gluten-Free since June '07

Do NOT have Celiac genes per GI doctor

2 kids, 3 y.o. girl and 19 month old boy

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Hi GFhopeful,

I too suffer from a lot of the same symptoms and spent last week in the hospital for 'celiac complications' of malnourishment, malabsorption, etc. One question- you mention that your heart rate goes sky high when you stand up. I wondered about your blood pressure. I traditionally have low bp (90/65), but in the hospital it went down to 73/44. They did tests to check lying/seated/standing bp and my bp standing went up to 100/70! My heart felt like it was racing and my head about to explode. I had always thought that my dizziness and occasional blackout on standing was due to low bp, but apparently it's the raise and crash.

I have all the symptoms you mention below and have for years. psawyer mentioned b12 & folate. Did they test all of the vitamins/mineral levels when you were in the hospital, along with albumin? I was pumped full of vitamins through IV while I was there. My symptoms are still there, but they are less. I'm still taking b12 injections every other day, and they're watching all my others carefully, especially b-complex & D. They also made me start eating red meat to get my protein levels up. I'm still losing weight, but I can stand up now!

I *really* think you should have vitamin levels tested - my intiial gi said it would all even out in the end w/ gluten-free but for many of us it won"t soon enough! I had no more reserves and though I looked fine I was really really sick. The weight loss is your body eating itself. You NEED vitamins for your brain and systemic functioning, and until the inflammation goes down, you may need help getting them. Any doctor can do these tests- my GI was resistent, he thought it was all about the gluten. My psychiatrist actually got the ball rolling with the testing!

One other thought- in the hospital, I was taken off zyrtec, amped way down on topamax prepatory to going off, and had a number of other meds changed too. Apparently they were adding to the effects of the celiac because a celiac gut/system doesn't absorb meds in the same way as a 'normal' system. I don't know if anyone has researched your meds lately or what you take to see if they affect the brain, gut, vitamins, liver/kidney levels ... mine were doing a real # on my body and shouldn't have been for a normal person.

I was dx the end of May too and have been desperate for support and info. I hope this is helpful. One hopeful thing - all that vitamin therapy did help!! I do feel better, and I do think it sounds very possible that celiac could be causing a lot of your probs but that you need some help.

so sorry so long!

all best,

grey

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Guest micah

Hi gluten-free hopeful,

I have not yet been dx with celiac, but I have your same symptoms. When I first got sick my legs were jerking in the middle of the night. My muscles were twitching all over, tachycardia, *twinges* inside my brain, weakness, couldn't stand up etc.. It sounds like you have some good doctors - mine just put me on antidepressants. I know how scary those symptoms are. I'm not qualified to tell you what to do, but I just wanted you to know that I'm also hopeful that gluten free diet will help restore me, and that even though I haven't healed, I'm still surviving 9 years later.

Micah

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Hi GFhopeful,

I too suffer from a lot of the same symptoms and spent last week in the hospital for 'celiac complications' of malnourishment, malabsorption, etc. One question- you mention that your heart rate goes sky high when you stand up. I wondered about your blood pressure. I traditionally have low bp (90/65), but in the hospital it went down to 73/44. They did tests to check lying/seated/standing bp and my bp standing went up to 100/70! My heart felt like it was racing and my head about to explode. I had always thought that my dizziness and occasional blackout on standing was due to low bp, but apparently it's the raise and crash.

I have all the symptoms you mention below and have for years. psawyer mentioned b12 & folate. Did they test all of the vitamins/mineral levels when you were in the hospital, along with albumin? I was pumped full of vitamins through IV while I was there. My symptoms are still there, but they are less. I'm still taking b12 injections every other day, and they're watching all my others carefully, especially b-complex & D. They also made me start eating red meat to get my protein levels up. I'm still losing weight, but I can stand up now!

I *really* think you should have vitamin levels tested - my intiial gi said it would all even out in the end w/ gluten-free but for many of us it won"t soon enough! I had no more reserves and though I looked fine I was really really sick. The weight loss is your body eating itself. You NEED vitamins for your brain and systemic functioning, and until the inflammation goes down, you may need help getting them. Any doctor can do these tests- my GI was resistent, he thought it was all about the gluten. My psychiatrist actually got the ball rolling with the testing!

One other thought- in the hospital, I was taken off zyrtec, amped way down on topamax prepatory to going off, and had a number of other meds changed too. Apparently they were adding to the effects of the celiac because a celiac gut/system doesn't absorb meds in the same way as a 'normal' system. I don't know if anyone has researched your meds lately or what you take to see if they affect the brain, gut, vitamins, liver/kidney levels ... mine were doing a real # on my body and shouldn't have been for a normal person.

I was dx the end of May too and have been desperate for support and info. I hope this is helpful. One hopeful thing - all that vitamin therapy did help!! I do feel better, and I do think it sounds very possible that celiac could be causing a lot of your probs but that you need some help.

so sorry so long!

all best,

grey

thanks for the reply. i didn't have vitamin levels checked so i think you are right that i need to pursue this and maybe get more supplementation than the daily gluten-free multi-vitamin I am taking. I need to be thankful for the positive changes so far as I really am maintaining weight and the GI symptoms are getting really close to normal. just the neuro changes are scary. as far as blood pressure, it seems like i have the oppostire problem as you, with elevated BP (140/100 at times). I haven't been on any medications prior to all of this but since the hospital, have been on a medication that's supposed to slow down the heart rate, reduce blood pressure, and prevent migraines. I just found out though that the manufacturor can not guaratee it is gluten-free so am trying to wean myself off of that now too - per doctor's guidance. keep in touch with your progress and I need to get going on the vitamins it sounds like.


Liz

Dianosed "possible Celiac" May '07 per biopsy with blunted villi

Bloodwork negative

Gluten-Free since June '07

Do NOT have Celiac genes per GI doctor

2 kids, 3 y.o. girl and 19 month old boy

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Hi gluten-free hopeful,

I have not yet been dx with celiac, but I have your same symptoms. When I first got sick my legs were jerking in the middle of the night. My muscles were twitching all over, tachycardia, *twinges* inside my brain, weakness, couldn't stand up etc.. It sounds like you have some good doctors - mine just put me on antidepressants. I know how scary those symptoms are. I'm not qualified to tell you what to do, but I just wanted you to know that I'm also hopeful that gluten free diet will help restore me, and that even though I haven't healed, I'm still surviving 9 years later.

Micah

This is encouraing to hear. I am grateful that I have not had to suffer for years like some of you have as things just got weird this past Nov or December with dizziness and sick "spells". It seems like long enough, I can't imagine 9 years! Docotors have been pretty good to me as I never felt like they didn't believe me, just didn't always know what to do with me. This message board is so great, as it's so nice to know that you are not alone.


Liz

Dianosed "possible Celiac" May '07 per biopsy with blunted villi

Bloodwork negative

Gluten-Free since June '07

Do NOT have Celiac genes per GI doctor

2 kids, 3 y.o. girl and 19 month old boy

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GFHopeful,

* HUGS * hang in there it should get better if you give it time and stick to the diet. It can take as long as 6 months to recover, from what I've read here and mistakes are very easy to make with this diet. Please keep an eye on it and involve the doctors, they may see things the rest of us don't. None of us here are experts, we just know what we've experienced. Hopefully explaining what I've experienced will help you.

I've had a lot of the same strange symptoms as you, along with the typical flu like symptoms. I get shakes without being cold, my heart starts racing, and I feel weak, brain fogged, light headed, and dehydrated (dry mouth and throat). My husband thinks the heart racing is a panic attack but I doubt that as it happens in the middle of the night, wakes me up, and sticks around even when I'm calmed down. I've managed to catch my temperature rising dramatically twice while I had the shakes and have wondered if it's shakes due to that. Bundling myself up to seems to help but it still takes a while for it to go away. The thing that seems to help most is doing things to take care of the dehydration.

It all seems to be connected to when I get glutened. I'm guessing that it has to do with my body attacking itself and not having the supplies (vitamins and minerals) it needs to accomplish it. When I found out that Celiac Disease causes absorption problems I started taking a gluten free vitamin from Whole Foods. Because I get dehydrated easily when I'm feeling like this, I've also added Gatorade or Water with Thermotabs (basically electrolyte tabs for heat prostration). All of these seem to help with the shakes, brain fog, and heart racing. I'd planed on talking to my GI doc about this when I see him next.

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Everyone is so nice. Yes, I have that flu-like thing with the chills and the heart-racing waking me up at night too. NOt for a couple of weeks though so like you, maybe it is just when I have a gluten attack. Thanks for making me feel "normal" as I have been feeling so abnormal lately. :)

Also, my doctor told me that Gatordade had gluten so I never checked it out for myself but will do so as well as check out the tabs you mentioned - and keep drinking water.


Liz

Dianosed "possible Celiac" May '07 per biopsy with blunted villi

Bloodwork negative

Gluten-Free since June '07

Do NOT have Celiac genes per GI doctor

2 kids, 3 y.o. girl and 19 month old boy

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You may have another disease too, but if they found blunted villi then you've got celiac. It's only been a short while for you and everyone makes oppsies at first. I know I felt better right away in some areas but it took longer (months, even a year) for other improvements. Your body probably has a lot of healing to do.

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Something other than water is a good idea; I drank only water - though a lot of it - and my electrolytes tanked and I ended up dehydrated while drinking well more than a gallon. I have small amounts of 100% apple juice (gluten-free) now too, and that helps. I don't remember if gatorade is gluten-free, I know I couldn't have it, but can't rem. why.

Anxiety is a symptom of celiac too - I feel like I've been on overdrive for so long - and my brain and body feel really tightly strung. I think it's getting better. I don't have the racing heart as much, and my chills (and just plain freezing all the time) are improving a little. I think it's going to be slow and on/off for a long time. Also, it's autoimmune, so sometimes it may not be directly glutening for the neuro symptoms but layers of things that cause a 'flare'. I'm not sure I said that how I meant exactly - hoep it made sense.

Everyone is so nice. Yes, I have that flu-like thing with the chills and the heart-racing waking me up at night too. NOt for a couple of weeks though so like you, maybe it is just when I have a gluten attack. Thanks for making me feel "normal" as I have been feeling so abnormal lately. :)

Also, my doctor told me that Gatordade had gluten so I never checked it out for myself but will do so as well as check out the tabs you mentioned - and keep drinking water.

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