Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
- - - - -

3 Years On, Still Sick.


  • Please log in to reply

78 replies to this topic

#31 GlutenFreeManna

 
GlutenFreeManna

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,887 posts
 

Posted 01 October 2010 - 05:07 AM

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).


Your dry mouth and eyes made me think of Sjogren's syndrome. Have you looked into it?
  • 0
A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

Celiac.com Sponsor:

#32 up late

 
up late

    Community Member

  • Advanced Members
  • PipPipPip
  • 33 posts
 

Posted 01 October 2010 - 11:15 AM

Sjogren's syndrome did cross my mind, could dry mouth be what's causing the gum recession? Apparently Sjogren's can also attack other parts of the body too but I haven't found much online that goes into that to see if my symptoms are similar. I've been getting chest pain and heart disturbances too but normal resting ECG, low BP, cholesterol etc. Low absorption though is going to give atypical results for heart problems unless they're looking at it from the perspective of starvation.

I don't know how I can be quality low calorie, gaining weight, taking the specialist recommended supplements and starving all at the same time, something is off and I'm definitely gluten-free. I was thinking along the lines of a mega dose vitamin injectable regime or IV nutrients to get my system back on track. When I took over the counter calcium after my osteoporosis diagnosis it didn't show in my bloods and came up in my urine instead, so straight through. My D went up with supplement but maybe it wasn't the right kind of D and maybe not enough. There is a risk of shock if it is malnutrition and I go taking mega doses and a risk of toxicity if I don't need them so I'm at a bit of a loss as to how I'm going to get that sorted. Given the aging population and the number of absorption and eating disorders around surely there must be a clinic or something somewhere for treating people who have been severely malnourished.
  • 0

#33 CarlaB

 
CarlaB

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,049 posts
 

Posted 01 October 2010 - 11:46 AM

Check out the Lyme Disease thread in the leaky gut forum and see if any of that sounds familiar.
  • 0
gluten-free 12/05

diagnosed with Lyme Disease 12/06

#34 up late

 
up late

    Community Member

  • Advanced Members
  • PipPipPip
  • 33 posts
 

Posted 02 October 2010 - 02:52 PM

Well the official line is that Australian ticks don't carry Lyme disease, but here's a local article http://www.portnews....re/1944198.aspx if it isn't here yet I'm sure it's only a matter of time.

I don't think it's that though, considering 2 gastrointerologists and multiple GPs missed coeliac for 18 years when in hindsight it was blindingly obvious I had it (anemia, electrolyte disturbances, wasting, classic toilet habits with excruciating pain, osteoporosis, vitamin deficiency and a + genotype, but apparently "it's VERY rare" :blink: ) I think given my history and the shoddy public health system here an autoimmune and/or complications is more likely and they are again missing the obvious. Problem is the symptoms are so common to a lot of things (and a lot of things there aren't definitive tests for) it's probably going to end up a process of elimination that drags on for years which I'm not at all happy about. No help most of my tests keep coming back clean while my health just keeps getting worse. You know I really would not be surprised if my GP's first instinct was right, if later I have another attack, they do a more comprehensive workup and it does turn out to be MS like he thought it was, I've heard that happens a lot.
  • 0

#35 CarlaB

 
CarlaB

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,049 posts
 

Posted 02 October 2010 - 04:19 PM

Yes, Ohio's ticks don't have Lyme either. That's basically the party-line almost everywhere. Many, many MS patients have Lyme as an underlying cause. You are right, any systemic illness can look similar. In my Lyme doc's differential diagnosis, he even tests for celiac disease because the two can be so similar. In fact, at first they thought I had celiac and the doctor was shocked that I did not. I went three more years before I got a Lyme Diagnosis and was bedridden by then.

I'm not saying you have it, I just wouldn't rule it out without looking into it first.
  • 0
gluten-free 12/05

diagnosed with Lyme Disease 12/06

#36 up late

 
up late

    Community Member

  • Advanced Members
  • PipPipPip
  • 33 posts
 

Posted 03 October 2010 - 04:52 AM

What's the treatment for Lyme? I've already had several kinds of antibiotics for various other things (keflex, flagyl, doxycyline, and trimethoprin) and multiple courses including long term low doses. This started after I got out of hospital when I was on trimethoprin, the first symptoms I had sound like viral encephalitis before it suddenly turned into what I have now.

At least one thing's in my favour, as well as the symptoms of a lot of the diseases/disorders being similar the treatments for a lot of them are also very similar so as long as they're in the right ballpark I should end up getting the right treatment, eventually. My GP has taken a very conservative approach in that respect and I've had a very conservative response to it, I've had to resort to over the counter pain relief so I hope he starts me on something soon before he ends up treating me for the complications of taking too many of them. I already went through the heartburn business with ibuprofen.

Does anyone know anything about selective igA deficiency? I read something about it causing false negatives on the antibody test and predisposing people to infections and autoimmunes.
  • 0

#37 Tidings

 
Tidings

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 78 posts
 

Posted 03 October 2010 - 01:42 PM

Somehow drs always manage to make me feel like a criminal pleading my innocence.


That description is absolutely PRICELESS--and so true for so many of us!
  • 1
Thanks to Sarah at personalizedcause.com for allowing me to adapt their beautiful green Celiac Awareness ribbon as my "avatar" graphic.

#38 georgie

 
georgie

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 963 posts
 

Posted 03 October 2010 - 02:45 PM

Up Late, When you say your Thyroid is fine - do you have the results ? Do you know what thyroid tests were done? There are several but many Drs only test TSH and FT4.

Have you had B12 checked? You may need injections. The B12 injections are the only thing that works for me. Sublinguals do not work. If you have this problem then you will have symptoms of MS... nerve zaps, tingles in feet, memory problems, fatigue etc Go to the forum here http://www.perniciou...ia-society.org/ And remember that Neo B12 injections are available in Australia without a prescription.

You have low Vit D. Have you considered Parathyroidism ? What are your calcium levels like? http://parathyroid.c...w-vitamin-d.htm Symptoms http://parathyroid.c...id-symptoms.htm

Remember not one result but several - and look for a trend. It is NEVER normal to have an abnormal calcium level.

Perhaps you need FODMAP diet as well as Coeliac? Have you consulted a FODMAP trained dietician and been tested for Lactose and Fructose malabsorption?

Hope some of this helps
  • 0


Diagnosed May 2006 - Hashimotos Thyroid after being diagnosed in 1977 and told it didn't matter.
Diagnosed June 2006 with adrenal insufficiency.
Diagnosed June 2006 as Gluten Intolerant after I failed the Challenge Diet. Negative blood test.No biopsy.
Diagnosed June 2006 as B12 low. Needed weekly injections for a year.Still have them every 2 weeks.
Trialled Dairy Free Diet and reacted positively to that challenge in January 07.
News Flash! Coeliac Genetic Testing done April 08 . DQ2 Positive !
Diagnosed July 2010 FODMAP. Limits on Fructose, lactose, polyols, fructans. NO ONION! But I can have hard cheese, butter and cream again!!!

#39 CarlaB

 
CarlaB

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,049 posts
 

Posted 03 October 2010 - 03:32 PM

What's the treatment for Lyme? I've already had several kinds of antibiotics for various other things (keflex, flagyl, doxycyline, and trimethoprin) and multiple courses including long term low doses. This started after I got out of hospital when I was on trimethoprin, the first symptoms I had sound like viral encephalitis before it suddenly turned into what I have now.


Long term antibiotics. It took me three years to get better. Did you see any changes on antibiotics? I mean either good or bad .... some people just start feeling better slowly, others have herxheimer reactions where they feel worse before they feel better.

I think most, if not all, of us with chronic health problems have several issues that are wrong - parasites, bacteria, fungus, hormonal, etc. All these other things take advantage of the fact that our health is compromised.

Bacterial overgrowth in the intestines of the bad kind of bacteria can also wreak havoc and cause systematic symptoms. I had klebsiella and citrobacter along with horrible parasites. It took me years to fix my gut issues of those problems. Low stomach acid also makes it hard to digest food. I still have to supplement HCL on occasion.
  • 0
gluten-free 12/05

diagnosed with Lyme Disease 12/06

#40 up late

 
up late

    Community Member

  • Advanced Members
  • PipPipPip
  • 33 posts
 

Posted 03 October 2010 - 06:08 PM

I go back to the GP tomorrow. I expect the next referral will be to a rhumatologist who'll likely check my thyroid again, I'm pretty sure my GP didn't do T3. B and parathyroid were fine. Could my ovaries have anything to do with it? My free testosterone is slightly high (cholesterol, BP, estrogen and progesterone normal) I've had problems with cysts before but told not PCOS. It wouldn't explain the neuro symptoms but might account for some of the other ones.

I didn't notice much of a difference either way with the antibiotics. I had them for over a year so my GP is trying to avoid having me on them again, I've already had repeated infections. I'd need a culture for specific bacteria to know what ones to take, as far as the insect borne illnesses go Ross river fever would be a more likely culprit than Lyme, it's a public health warning kind of local, mosquitoes for some reason think I'm more tasty that everyone else in a 10 mile radius, my cousin had it and I was living in an area when it had an outbreak. I didn't have symptoms but I've had glandular fever too and didn't have symptoms with that either. I've been chronically sick for so long when I do get an infection I barely notice if that's any kind of measure of how much trouble my general health has been. Problem with Drs here too is you have to be 1/2 dead before they find anything wrong with you, by that stage the last thing I feel like doing is dealing with Drs.

I'm definitely getting opportunistic infections, thing is I'm resting, taking vitamins and eating properly so there's really nothing else I can do about it, all it takes is a little stress and I crash. I thought selective igA deficiency might be behind it, I don't know if I have that though.
  • 0

#41 kittyluvr

 
kittyluvr

    New Community Member

  • Members
  • Pip
  • 5 posts
 

Posted 03 October 2010 - 08:02 PM

I go back to the GP tomorrow. I expect the next referral will be to a rhumatologist who'll likely check my thyroid again, I'm pretty sure my GP didn't do T3. B and parathyroid were fine. Could my ovaries have anything to do with it? My free testosterone is slightly high (cholesterol, BP, estrogen and progesterone normal) I've had problems with cysts before but told not PCOS. It wouldn't explain the neuro symptoms but might account for some of the other ones.

I didn't notice much of a difference either way with the antibiotics. I had them for over a year so my GP is trying to avoid having me on them again, I've already had repeated infections. I'd need a culture for specific bacteria to know what ones to take, as far as the insect borne illnesses go Ross river fever would be a more likely culprit than Lyme, it's a public health warning kind of local, mosquitoes for some reason think I'm more tasty that everyone else in a 10 mile radius, my cousin had it and I was living in an area when it had an outbreak. I didn't have symptoms but I've had glandular fever too and didn't have symptoms with that either. I've been chronically sick for so long when I do get an infection I barely notice if that's any kind of measure of how much trouble my general health has been. Problem with Drs here too is you have to be 1/2 dead before they find anything wrong with you, by that stage the last thing I feel like doing is dealing with Drs.

I'm definitely getting opportunistic infections, thing is I'm resting, taking vitamins and eating properly so there's really nothing else I can do about it, all it takes is a little stress and I crash. I thought selective igA deficiency might be behind it, I don't know if I have that though.


You can test false negative with the Celiac blood tests and you can also have a biopsy come back "clean" - I did - 3 of them, as a matter of fact. There is a test for the IGA deficiency, too. You sound so much like me. I've had shingles 3 times, now. Although, I'm not getting as sick as I used to, but I think that is because my immune system is in hyper mode right now. Also, the anti-rheumatoid drugs (methotrexate and the like) won't work against the Celiac auto immune symptoms. I had a Rheumy once who knew a lot about Celiac and its' treatments. Basically, she told me that it is still such a newly recognized illness (old disease, but they just realized it is not at all rare), that doctors just do not know all of the symptoms and what all could be happening besides the gluten intolerance. For many, staying off gluten does the trick. For many others, it does not. But, the ones who it seems to affect the worst, as far as not getting better being gluten-free, are the ones who were sick for a long time and went undiagnosed. I once had a really good veterinarian when I had horses. He said "if I waited for anything to show up in my patients' bloodwork, they'd all be dead". I wish more doctors were aware of that.
  • 0
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

#42 georgie

 
georgie

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 963 posts
 

Posted 03 October 2010 - 08:33 PM

A Rheumy does not test Thyroid. A good thyroid specialising GP is the best. One of the holistic style GPs that you find from here would be a good place to look. http://www.acnem.org...publish/?tac=23 Some people go to Endos but lots find an Endo so old fashioned that it is a useless appt. I saw 4 Endos and they were all terrible and my GP is much better. You need Free t3 and Thyroid Antibodies tested. Do you have your paperwork? The holistic GPs usually search and then treat Fibromyalgia with thyroid meds.

What was your B12 result? Did you have Homocysteine and MMA tested as well? The B12 test is not that reliable. Have you read Sally Pacholok's 'Could it Be B12". I think it is Chapter 3 that is all about the link to MS symptoms. Was your Parathyroid tested at the same test as the calciums and were they ALL mid range at the same time?

Go over your papers and results and look for areas that the Drs are missing the trend.
  • 0


Diagnosed May 2006 - Hashimotos Thyroid after being diagnosed in 1977 and told it didn't matter.
Diagnosed June 2006 with adrenal insufficiency.
Diagnosed June 2006 as Gluten Intolerant after I failed the Challenge Diet. Negative blood test.No biopsy.
Diagnosed June 2006 as B12 low. Needed weekly injections for a year.Still have them every 2 weeks.
Trialled Dairy Free Diet and reacted positively to that challenge in January 07.
News Flash! Coeliac Genetic Testing done April 08 . DQ2 Positive !
Diagnosed July 2010 FODMAP. Limits on Fructose, lactose, polyols, fructans. NO ONION! But I can have hard cheese, butter and cream again!!!

#43 georgie

 
georgie

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 963 posts
 

Posted 03 October 2010 - 08:35 PM

How did you fix the SIBO ? I now realise that a previous breath test I had - is only 60% accurate!


Long term antibiotics. It took me three years to get better. Did you see any changes on antibiotics? I mean either good or bad .... some people just start feeling better slowly, others have herxheimer reactions where they feel worse before they feel better.

I think most, if not all, of us with chronic health problems have several issues that are wrong - parasites, bacteria, fungus, hormonal, etc. All these other things take advantage of the fact that our health is compromised.

Bacterial overgrowth in the intestines of the bad kind of bacteria can also wreak havoc and cause systematic symptoms. I had klebsiella and citrobacter along with horrible parasites. It took me years to fix my gut issues of those problems. Low stomach acid also makes it hard to digest food. I still have to supplement HCL on occasion.


  • 0


Diagnosed May 2006 - Hashimotos Thyroid after being diagnosed in 1977 and told it didn't matter.
Diagnosed June 2006 with adrenal insufficiency.
Diagnosed June 2006 as Gluten Intolerant after I failed the Challenge Diet. Negative blood test.No biopsy.
Diagnosed June 2006 as B12 low. Needed weekly injections for a year.Still have them every 2 weeks.
Trialled Dairy Free Diet and reacted positively to that challenge in January 07.
News Flash! Coeliac Genetic Testing done April 08 . DQ2 Positive !
Diagnosed July 2010 FODMAP. Limits on Fructose, lactose, polyols, fructans. NO ONION! But I can have hard cheese, butter and cream again!!!

#44 up late

 
up late

    Community Member

  • Advanced Members
  • PipPipPip
  • 33 posts
 

Posted 04 October 2010 - 04:27 AM

You can test false negative with the Celiac blood tests and you can also have a biopsy come back "clean" - I did - 3 of them, as a matter of fact. There is a test for the IGA deficiency, too. You sound so much like me. I've had shingles 3 times, now...

I was negative for the antibodies but positive for the genotype, apparently that's something that happens with the igA deficiency. A Dr I spoke to recently said they have a new blood test they do when they test antibodies because the one I was negative for wasn't reliable.

Shingles could be a possible, my grandmother used to get it, she was actually hospitalized a couple of times because of it. There is an atypical presentation that doesn't have a rash and has neuro symptoms. Having said that I have been getting rashes, I assumed DH because of the itch but maybe it's not. I only used to get it on my wrists and ankles pre gluten-free, this looks more like the lupus rash or rosacia. I'm also getting sparse little dots/lumps everywhere, they come up like little insect bites.

...I had a Rheumy once who knew a lot about Celiac and its' treatments. Basically, she told me that it is still such a newly recognized illness (old disease, but they just realized it is not at all rare), that doctors just do not know all of the symptoms and what all could be happening besides the gluten intolerance. For many, staying off gluten does the trick. For many others, it does not. But, the ones who it seems to affect the worst, as far as not getting better being gluten-free, are the ones who were sick for a long time and went undiagnosed.

The dietitian said the same, they're finding out new things all the time. I was undiagnosed 18 years, or rather it was 18 years that I was actively seeking a diagnosis due to symptoms, I had an osteoporosis diagnosis at 38 so as you can imagine it's done a lot of damage.
  • 0

#45 CarlaB

 
CarlaB

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,049 posts
 

Posted 04 October 2010 - 05:15 AM

Georgie, I took Humaworm, which kills parasites - bacterial and others. It helped immensely.

I also took oregano oil, grapefruit seed extract, Nutramedix enula, coconut oil, plant tannins, etc. at various times.

I ate a lot of cultured (not pasteurized is important) foods like kefir, kombucha, and fermented veggies/sauerkraut.

I took HCL when I ate to help digest. Sometimes the pathogens in our guts can be from low stomach acid, which also makes food hard to digest.

I avoided sugar and simple carbs. I ate plenty of carbs, just avoided things like white rice, etc.

I took VSL#3, a probiotic with 450 billion organisms, also Theralac and Ultra Flora, to rebuild the gut with good bacteria.

I still do much of this stuff, but at this point, after a three years of this, my gut seems to be healed. If I eat too many raw veggies at a meal though, or combine a lot of different types of foods, I still need the HCL.
  • 0
gluten-free 12/05

diagnosed with Lyme Disease 12/06




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: