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3 Years On, Still Sick.


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#16 cassP

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Posted 07 September 2010 - 07:01 AM

I've pretty much eliminated glutening as the cause, even with the possibility of hidden sources it's the wrong profile and wrong symptoms for what's been happening but I'm sure the dr will send me back to the dietitian for a review anyway. I've already done the elimination diet for food intollerance and scratch testing for environmental allergies.

Multiple Sclerosis has been ruled out by my GP and a Neurologist via an MRI, neuro exam and nerve conduction study. Having said that the attack/relapse/fare (?) had subsided when I got to testing. I'd rung the MS society when I had to wait too long to see the neuro and been left struggling to look after myself during that time, they said it could show up later, that a lot of people get their diagnosis via a second opinion, and some are not diagnosed at all till autopsy, so no doesn't mean definitely no. The society have a list of specialist MS drs, I can get back to them later if I'm not convinced it's not MS.

First things first though I need to finish going through the diagnostic process with my GP to get to the bottom of what just happened and why I'm not getting any better, at least until he runs out of things he can test for. Then why I have so much exhaustion, why I keep getting infections and other illnesses when I didn't pre gluten-free. Also I've noticed milky white symmetrical bands across all 8 of my fingernails that weren't there last week, (they look like these ones http://img.medscape....liams.fig19.jpg) I've never had them before.

I've had my thyroid levels checked, repeatedly, been asking about it for a while because I've had all those symptoms for years.

Other autoimmunes are on the list, been tested for diabetes and RA so far and my liver, creatine and blood counts are normal. I'm back at the drs tomorrow so hopefully I'll have more news then.


your medscape link didnt work??? or maybe it's just my computer??? i wanted to see what you were talking about on your fingernails. i have ridges on my thumbnails... and horizontal cracks on my fingerprints- both of which are linked to gluten sensitivity and celiac
i havent read all your posts... but even if you dont have Celiac- there are several resources out there linking Gluten to other Autoimmune illnesses... and also Viruses being triggers for many Autoimmune & Neurological illnessess.
i hope you get answers soon- and we're all interested for you to keep us up to date :)
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1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

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#17 Skylark

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Posted 07 September 2010 - 09:13 AM

Here you go. http://img.medscape....liams.fig19.jpg

The link had an extra ")" at the end.

By the way, if there are no ridges and only pale color, your nails have Mees' lines or Muehrcke’s lines. Mees' lines grow out, Muehrecke's don't. Here's some pretty good nail info.

http://www.aafp.org/...0315/p1417.html

Are you on well water, and has it been thoroughly tested for heavy metals?
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#18 GlutenFreeManna

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Posted 07 September 2010 - 09:21 AM

OMG, my nails have lines through them that look just like that picture. I never noticed them before now.
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A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

#19 cassP

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Posted 07 September 2010 - 10:39 AM

Here you go. http://img.medscape....liams.fig19.jpg

The link had an extra ")" at the end.

By the way, if there are no ridges and only pale color, your nails have Mees' lines or Muehrcke’s lines. Mees' lines grow out, Muehrecke's don't. Here's some pretty good nail info.

http://www.aafp.org/...0315/p1417.html

Are you on well water, and has it been thoroughly tested for heavy metals?


thankyou so much for those links! i just learned a lot on there!! i now think i can describe my thumbnails as having Beau's lines & indentations in the middle of my thumb. i found identical pics on google.... and learned that Beau's lines can be caused by systemic disease, malnutrition, or even simply from habitually picking at the skin at the beginning of the nail-> which i ALSO TOTALLY do all the time

i love learning pieces to the puzzle... it's satisfying after decades of doctors shrugging their shoulders and saying :" i dont know?" :)
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1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

#20 up late

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Posted 07 September 2010 - 10:29 PM

Here you go. http://img.medscape....liams.fig19.jpg

The link had an extra ")" at the end.


Ah, I didn't think the link had gone through, thank you. I'm going to have a go at posting the link for its article, sometimes it comes up ok and sometimes it tries to get you to sign up. http://www.medscape....rticle/712251_3

It's only the white frosty stripe with no indentation I have, they're underneath not on top of the nails and new which makes me think it's relevant, I only noticed them yesterday. I also have groves that run the length of all my nails which alternative health people seem fascinated by but they've always been there and never bothered me. I'll see if I can upload a pic.

Posted Image

Posted Image

Heavy metals as far as I can tell shouldn't be a problem, I haven't had bore or tank water for over a decade, nothing much has changed here in my environment or intake and I don't see anyone trying to bump me off with lethal concoctions (not unless you count trying to bureaucrat me to death).

Thanks for the ME links too, I got lots out of hummingbirds site especially.

The dr said today he thinks I may have Fibromyalgia, he's given me a low dose TCA to see if it helps the pain, I took it earlier along with some ibuprofen. It did help but not unlike the way being unconscious does, less pain but I also can't feel or do much else either so I'm now the less painful version of practically useless. I'm already noticing some of the side effects too and if they make me put on more weight I'll scream, I'm fighting a losing battle with that as it is.

I'm not happy about fibro as a possible diagnosis unless it gets me to a rhumatologist who can dig a bit deeper. If he does give me that diagnosis I'm rejecting it, I'm sick of mistreatment and my suffering being trivialized, it has not been a productive day.
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#21 kittyluvr

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Posted 07 September 2010 - 10:40 PM

Up late: Your post could have been written by me!! Although, I went undiagnosed for nearly 50 years so I had tremendous damage to my entire body (I was at the emergency room in a total body muscle spasm gripping my right side from the horrible pain when a surgeon suggested a gastro for me to see) when I was finally diagnosed. I've had shingles twice since diagnosis, and I continue to suffer with tingling/numbness in the hands/feet and I get terrible muscle spasms still - very painful - also have really bad tendonitis and muscle weakness. Sometimes I can barely make it up the stairs, sometimes I walk up no prob. Makes no sense to me. Blood tests are normal - but then they were normal when I was in the middle of a thyroid storm, too, so I don't think relying on blood work for me works real well. But, I can't get any docs to believe that my blood doesn't show much. I mean, even all the vitamin blood results showed me in the "normal" ranges when I was so severely sick from the Celiac. I wish I knew what was going on, because I've now been labeled with Fibromyalgia (I don't have the necessary tender points) and "chronic pain syndrome" and I can't even get a doctor to see me in the new city we just moved to because of it. I'm better than before I went off gluten, but I am not "well". I hope you find some answers, because I can't even get in to see a doc, now.
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undiagnosed Celiac Stomach probs since childhood - Overweight since childhood - 1960
DX Graves 1987 - treated radioactive iodine - now hypothyroid
DX Myofacial Pain Syndrome 1989
DX Fibromyalgia - degenerative disc disease 1999
DX sero-neg rheumatoid arthritis, tenosynovitis, bursitis 2000
DX degenerative disc disease
IGA >200 TtG 251 Positive Celiac on biopsy 2001
DX Osteopenia 2002 Spinal stenosis 2003
Shingles (zoster) 1999 and 2010 - Low Positive ANA 2010
DX Reactive hypoglycemia - chemical sensitivities

#22 up late

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Posted 08 September 2010 - 11:34 AM

Somehow drs always manage to make me feel like a criminal pleading my innocence. I had symptoms for 18 years before diagnosis, my GP at the time had tossed me into the "depression" basket and wouldn't listen to a thing I said. It gave the medical profession a license to dismiss (doesn't stop them taking the money though). I had to go to another dr and kick up a stink just to get what should have been routine post diagnosis screening (which also came back positive).

Fibromyalgia doesn't even match my symptoms, the sudden partial paralysis, why if I don't have spasm and inflammation anti inflammatories and muscle relaxants work where opiates do not, why the treatment of choice makes me sicker. I don't have "fatigue through to exhaustion" the way they so coyly describe it, at times my hands and legs shake so much from pain I can barely walk, eat or have a cup of tea without dropping it or spilling it all over myself, no matter how much rest I've got it's not improving.

When I was younger I pretty much acted like I was bullet proof, it's only now I start looking after myself I get these problems? It's a toss up between which is worse, the symptoms I had before gluten-free or the ones I have now since at least before I could function some of the time, if my tests have improved then why am I worse off? If I get glutened I end up pretty much with both set of symptoms although I am considering committing to go off the diet for a set period of time to see if I can push myself through that till my sensitivity calms down, if in spite of what I know about coeliac I'm able to at least function again. Somehow the better life expectancy doesn't count for much when I have no quality of life and am having trouble looking after myself.

I'm about to give up on drs, I'm getting the "run out of ideas" labels now, it's like running into a brick wall, they've had more than ample opportunity to figure this out, I need to try something else.
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#23 Marz

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Posted 10 September 2010 - 11:43 AM

As a last-ditch resort, if you still feel it's something you're eating - maybe try keeping a food journal? Do you think the symptoms come and go, or some days you feel better than others? When did you do the elimination diet - might be worth doing it again, since some people find new intolerances developing or rearing their head after being gluten-free for a while.

I'd second the suggestion to stay off the gluten-free grains for now, just in case, though it sounds like you're pretty much gluten free atm.

Are you also dairy and soy free? Symptoms from this can be different from gluten, and still very severe. Can also start later after being gluten free for a while.
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Feb 2010 - Start of continuous GIT problems and panic attacks
July 2010 - Blood and biopsy -ve, went gluten free after testing which completely relieved symptoms
July 2011 - 1 year gluten free, food intolerances (Chicken, eggs, olives, goat milk) gone!

2012 - Soy no longer a problem
*************************************************************
Gluten intolerant

#24 Skylark

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Posted 10 September 2010 - 12:13 PM

You might have a look at this as well if you think it's your food.
http://www.plantpois...ation-diet.aspx

Check the symptoms page. It lists fibromyalgia and MS-like symptoms.
http://www.plantpois...t/symptoms.aspx
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#25 kittyluvr

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Posted 10 September 2010 - 11:05 PM

Somehow drs always manage to make me feel like a criminal pleading my innocence. I had symptoms for 18 years before diagnosis, my GP at the time had tossed me into the "depression" basket and wouldn't listen to a thing I said. It gave the medical profession a license to dismiss (doesn't stop them taking the money though). I had to go to another dr and kick up a stink just to get what should have been routine post diagnosis screening (which also came back positive).

Fibromyalgia doesn't even match my symptoms, the sudden partial paralysis, why if I don't have spasm and inflammation anti inflammatories and muscle relaxants work where opiates do not, why the treatment of choice makes me sicker. I don't have "fatigue through to exhaustion" the way they so coyly describe it, at times my hands and legs shake so much from pain I can barely walk, eat or have a cup of tea without dropping it or spilling it all over myself, no matter how much rest I've got it's not improving.

When I was younger I pretty much acted like I was bullet proof, it's only now I start looking after myself I get these problems? It's a toss up between which is worse, the symptoms I had before gluten-free or the ones I have now since at least before I could function some of the time, if my tests have improved then why am I worse off? If I get glutened I end up pretty much with both set of symptoms although I am considering committing to go off the diet for a set period of time to see if I can push myself through that till my sensitivity calms down, if in spite of what I know about coeliac I'm able to at least function again. Somehow the better life expectancy doesn't count for much when I have no quality of life and am having trouble looking after myself.

I'm about to give up on drs, I'm getting the "run out of ideas" labels now, it's like running into a brick wall, they've had more than ample opportunity to figure this out, I need to try something else.


Don't feel too bad. I was called a "cunundrum" by the last doc. I just today was able to get an appointment with a brand new internist in town. I go in a couple weeks. I hope this one will try to figure this out and not just say "oh well". That article on the food additives and chemicals was really informative. Gave me something else to consider. Thanks. I so wish I could just eat like "normal" people. :(
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undiagnosed Celiac Stomach probs since childhood - Overweight since childhood - 1960
DX Graves 1987 - treated radioactive iodine - now hypothyroid
DX Myofacial Pain Syndrome 1989
DX Fibromyalgia - degenerative disc disease 1999
DX sero-neg rheumatoid arthritis, tenosynovitis, bursitis 2000
DX degenerative disc disease
IGA >200 TtG 251 Positive Celiac on biopsy 2001
DX Osteopenia 2002 Spinal stenosis 2003
Shingles (zoster) 1999 and 2010 - Low Positive ANA 2010
DX Reactive hypoglycemia - chemical sensitivities

#26 up late

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Posted 11 September 2010 - 01:03 AM

You might have a look at this as well if you think it's your food.
http://www.plantpois...ation-diet.aspx


That was the diet I did, I was an outpatient at Royal Prince Alfred Hospital. It took several months to complete, I was methodical in taking the notes and did it exactly as they said. I got a + for a preservative and some intolerance to amines. I've booked in to go back in November (the first appointment I could get) so I might find out something then. The dietitian there though did admit they are still finding out about these things, it's not yet a perfect science.

I do have some good news, I think the meds the dr gave me are doing something, (touch wood) that or I just happen to be having the best few days I've had this year, so much else I tried didn't work or had such bad side effects I couldn't take it. I'm not pain free but at the moment I only have the result of an Evil Kenevil lifestyle type pain, not the can't describe it, being ground into a pulp, legs in a centrifuge, frozen solid, sure I must have been exhausted from birth because I can't remember never feeling this awful, all over mind splitting headache feeling that words don't go far enough to describe. The closest I've come to feeling that way was waking up in pain after an operation, it's that kind of pain. I think it might be some type of neuralgic pain (since that's the treatment it's responding to) I didn't know such a thing existed.

You know it took me this long to think it might have been pain that was making my hands and legs shake, my whole being totally gutted after just a few hours of activity, sabotaging my cognition and making me snappy? It wasn't till I spoke to someone from chronic pain on a hunch that it started to make sense. A lot of it's been building below my level of consciousness and I've been so exhausted I struggle to think straight, I feel like a bit the frog in the boiling pot. If this treatment works it was pain causing the fatigue, I'm yet to test it to see if it has improved my number of functioning hours. I'm at least feeling better enough to be able to remember what I was like before all this.

What causes neuralgic type pain? Is it going to get worse? My biggest fear is either they find out and it's too late/untreatable or they won't find out and I'll be stuck without closure not knowing what will happen next. I still have a horrible feeling it's to do with not being diagnosed early enough.
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#27 Skylark

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Posted 11 September 2010 - 08:26 AM

It doesn't sound like it couldn't possibly get worse! I'm really glad to hear the TCA is helping.
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#28 GFinDC

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Posted 11 September 2010 - 10:31 AM

Seems like I've read that the B vitamins can help with nerve health. b-21 etc..
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#29 up late

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Posted 30 September 2010 - 10:50 PM

I spoke too soon on the TCA, it's stopped working (seems all it did was make me sleep better and I lost that effect once I started to get used to it), I'm on codeine to hold me over till I see the doc next week. My pain's started getting worse, I'm back to being cold intolerant, my ears are ringing really loud, my eyes are so dry the inner corners are sunken and when I wake up I have to flood them with drops or I can't open them, when I do they're bloodshot. The pins and needles and numbness are back but now total numbness and in my arms and legs as well as feet and fingers, today I had to run my thumb under hot water because I couldn't get feeling back into it, when I finally did I wished I hadn't, it felt like I'd sliced it open. My gums have been rapidly receding too (no bleeding, redness etc and no gum disease, I spent so much on orthodontists I'm obsessive about maintaining them) I do not want to lose my teeth. Everything's coming apart.

Is it possible I could have osteomalacia? I have osteoporosis and my symptoms are consistent. I have had low D before but I'm sure I was tested this time along with B, blood count etc, I'm beginning to think I need to find a new lab to go to for my bloods.

Has anyone been on any kind of intensive nutrition therapy, mega doses of nutrients/vitamins or something similar? I'm considering trying something like that, if not for an undiagnosed deficiency then at least to improve my immunity. I find it hard to believe I could fix 18 years of malabsorption with the over the counter one a day supplement I was recommended and I've got to do something about this while I can still look after myself.

Someone mentioned something in an earlier post about they got more numbness/tingling etc after quitting smoking? I just remembered today the even though smoking constricts blood vessels (theoretically causing it/making it worse), nicotine is also a stimulant so that might have something to do with it (I can think of less harmful stimulants I'd rather use than go back to smoking though).
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#30 ravenwoodglass

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Posted 01 October 2010 - 02:26 AM

If your not taking a good for sure gluten free megavitamin you should be. I take a vitamin by Country Life and they are a reliable gluten-free company. Be sure to read the whole label on vitamins as some will say gluten free but contain wheat and barley grass and you don't want those. You also may still need supplementing with vitamin D. You should also be taking a sublingual B12 even if your levels appear normal it may help you a great deal.
You mentioned in a previous post that you still consume distilled gluten grains but they are labeled gluten-free. I would stop that as distilled gluten grains may be considered gluten free but a very few of us, myself included, react to them. They really flare my neuro symptoms a lot. Don't know if that is the case with you but it is worth a shot to give them up for a bit.
I am sorry the TCA hasn't helped, they didn't help me at all either.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)


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