Cpnhelp.org

I have celiac disease. I am sure I had it since childhood. I was so skinny I looked like I lived in a concentration camp. My hip and leg bones are slightly mishappen like in rickets. I am also sure I had cpnⁱ infection since I was a child. I don't know which came first, but they worked together to cause me much harm. The percentage of people with gluten intolerance is much higher than is commonly believed. Agriculture has bred wheat to be so high in gluten, that a slice of bread is almost a trampoline.

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minocycline, azithromycine, metronidazoleⁱ 2007-2009, chelation for lead poisoning, Lauricidin: muscle pain, insomnia, interstitial cystitisⁱ (almost well), sinus, dry eyes, stiff neck, veins, hypothyroid, TMJ, hip joints (all well now)

Now that's interesting. As a child I too was skinny as a rake even thought I ate like a horse. I was diagnosed with hyperactive thyroid which spontaneously righted itself when I was 20.

Reading the Celiac info it seems they link it to thyroid problems.

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Berkshire, UK. Diagnosed RRMSⁱ Feb 4th 2008.

NACⁱ 2400mg. All supps. Doxyⁱ 200mg. Zithⁱ 250mg. Metroⁱ 400mg.
No GP/Neuroⁱ support. Self medicating with help from David Wheldonⁱ.
Started CAPⁱ 20th April

Hmmm, and I contend those thyroid problems are cpnⁱ-related. And so the wheel turns.

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The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

I think I had Hashimotos's when I was 12, and I was hot and my eyes slightly bulged out. My thyroid then sputtered out, and I became cold-natured. I stayed skinny. I already had white spots on my skin as a teenager, and red nose and hands.

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minocycline, azithromycine, metronidazoleⁱ 2007-2009, chelation for lead poisoning, Lauricidin: muscle pain, insomnia, interstitial cystitisⁱ (almost well), sinus, dry eyes, stiff neck, veins, hypothyroid, TMJ, hip joints (all well now)

Hi Andesine, nice to hear from you, have not seen any of your posts and had begun to wonder about you.  Well I like the terms gluten enteropathy or gluten intolerance which can go along with lactose intolerance, more descriptive as such it is not a disease from my perspective.    So yes I have been treating this with diet for 20 years.   Female line direct female cousin of my mother's sister outed the condition and her tissue typing etc postive results.  She sounded like a match to me, so I emperically (a bit like emperical tx of CAPⁱ based on symptoms for some here) became totally and religiously abstinant of all gluten containing food items.   About 10 years into the process I went to a Gastroenterologist who was knowledgable and he did blood and bowel xrays, I did not follow up with Biopsy tissue testing.  Both blood and x-ray results were negative and I was in remission per his estimation and he concurred based on my symptoms history and symptoms from rare indiscretions that I had gluten enteropathy and should educate my children as well.  I have with limited success. A little like suggesting to folks that CPnⁱ may be a part of their complaints .  At least once they need the solution they will have a clue as what is up and how to handle it.  They ate from a rice based kitchen for years!  Like a few things in life abstinance is the cure!   An emprical trial is not hazardous to your health, sometimes limits choices out to eat and requires some creativity balancing a meal and learning about the ingredients in foods. 

  Now 20 years after, gluten and wheat free products are available and somewhat palatable.  When you want something crisp and dry to eat there are always the old standby rice cakes.   Also in the UK oat cakes abound, some with celiac sprue (another name for the same condition, I think there may be 4 or 5 just to confuse things.  Thanks for the link it was a fairly good one for education). Some can tolerate oats but not all with the condition.  Oat cakes here in the US are expensive and imported but I am fond of them and use them as a treat on occasion.

Please continue to blog your experiences around this addition to your self treatment approach.  I for one will be most interested to follow and discuss this with you.

Louise

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6-07WheldonCAP CFS20+yr

(11-29-07 started Cholestyramine HS PRNⁱ x 7d for porphyrin+endotoxinsⁱ removal)

Check out Louise's Blog at; http://www.cpnhelp.org/blog/louise for the details of my treatment adventure!

Got diagnosed with it about 8 months after diagnosed with MSⁱ. My MS really came to the fore however after trying the Aitkens diet (pre Coeliacs, pre MS).

 

No doubt diet is a major factor in determining the course of MS. My MS is fairly under control. But abxⁱ came about 6 months post starting a Coeliac diet. I did when investigated for it hve some very wierd blood work results. I should try and track those down. Something to do with Iron....

 I actually lost weight after diagnosis with Coeliacs. But feel a billion times better on a gluten free diet. Possibly going on a gluten free diet has helped min. relapse. Its so hard to pinpoint one thing given how many major changes I made to my lifestyle in that one year period.

Wow this is an old post from 2008.   Interesting when topics come back around.

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6-07WheldonCAP CFS20+yr

(11-29-07 started Cholestyramine HS PRNⁱ x 7d for porphyrin+endotoxinsⁱ removal)

Check out Louise's Blog at; http://www.cpnhelp.org/blog/louise for the details of my treatment adventure!

It is vitally important to be screened for as many things as your doctor can think of before heading off down one road for treatment.  Especially if you are treating something "empirically".  Everyone that has bizarre symptoms should be tested for celiac disease/gluten intolerance....among other things.  Test for lots of things.  Treat what is most obviously wrong, be it one thing or many things. 

Hoser~  Keep track of your iron status...make sure it normalizes.  The only way you will know is to track your iron status on a regular basis.  I had to do it monthly for a long time.  While you're at it, get tested for B12 deficiency.  Many people with celiac disease are B12 deficient.  B12 deficiency can cause major problems.  

Happy Thanksgiving to all,

Timaca

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Dx  lyme disease 3/05. Dx HHV-6, EBVⁱ, VZV, and HSV1 6/07. Dx with CPnⁱ 5/08 and enterovirus 2/09. On antibioticsⁱ for 2+ years, Valcyte (antiviral drug) for 9 months. On 100 mg doxyⁱ bidⁱ for Cpn, acyclovir for viruses, oxymatrine for enterovirus

You're right on the B12. In the first year after moving to the UK I got cold after cold after cold. I got tested for all sorts of things (not Coeliacs) but was tested as being low in B12. I was asked by my GP if I was vegan as its quite common among them. Of course I wasn't. It wasn't till a few years later (well several in fact) that the MSⁱ reared its head and I was diagnosed as Coeliac. I've not had ongoing blood work. I really doubt my GP would agree to this and paying for it privately is just too dear. I'll try to get the blood work done by my gastroenterologist. That was private through BUPA. But I'm sure those records are still around...Just need to find the time to request them.

Further to that...If you're diagnosed as MSⁱ but in fact your symptoms are caused by vitamin deficiency such as B12 which is known to be a key vitamin in regards to the CNSⁱ, then how does anyone know whether it is genuinely MS or just Coeliac wrecking havoc on your system? Once you go gluten free and it takes about 6 months to get your system back in order, how do you know if symptoms alleviate what the original issue really was? I had a lumbar puncture + MRI spinal and brain. I tested positive for those antibodies they look for in the spinal flluid. If hypothethically I was misdiagnosed then how can the antibodies be explained? I've always secretly hoped it was just Coeliacs or something else like Hughes Syndrome, etc. But those antibodies are hard to explain away....But whether it was the abxⁱ or the gluten free diet, or the LDNⁱ (see its so hard to pintpoint what's working for me). I've stopped progressing. I almost hate to write those words (a bit of superstition maybe lol). The fatigue remains and that is a major issue but in terms of walking, strength, vision, etc. I'm ok. A few sensory symptoms too that keep me mindful that I have it and not to take things ever for granted

Hi Hoser~  It can be very difficult to sort out everything that can be causing health issues, but it is important to do so.  That way everything that is wrong can be addressed.

If it has been some time since you've had your iron status checked, then your GP should have no problem ordering blood work to see how you are doing now.  In addition to the CBC, which tests for Hct and Hgb, ask for serum iron, % saturation and ferritin.  This will give you a more complete picture of your iron status.  If any of those are abnormal, begin taking iron supplementsⁱ (asking your doctor how much) and retest in a month.  If those values are not improved, you will need to increase the amount of iron that you are taking.  I started out taking 65 mg of elemental iron.  That wasn't enough.  I ended up taking over 200 mg of elemental iron daily, and that wasn't enough.  Eventually I ended up with a uterine ablation.   It is important to monitor your iron status, otherwise you won't know what is going on, or if what you are doing is helping.  I would think your GP would be OK with that if there is something abnormal.  Of course, if your tests are all normal now, there would be no need to monitor it so closely.  

Likewise with B12.  Make sure those values are within normal limits too if they were once low.  I had heard that being above 400 ng/mL was best, no matter what the low end of the reference range is.  Likewise, the iron disorders doctor overseeing my care told me my ferritin needed to be over 50 ng/mL no matter what the reference range of the lab is.  He wanted it at 100 before I quit taking iron supplementsⁱ.  That took me two years post ablation to attain!  (My ferritin was at 5 to start with...and that was after taking iron supplements for 3 months).

I am glad that you have stopped progressing.  The body is so interconnected....doctors are still trying to figure it out...So taking care of some of your issues, may help with all that you are facing.

Good luck.    Timaca

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Dx  lyme disease 3/05. Dx HHV-6, EBVⁱ, VZV, and HSV1 6/07. Dx with CPnⁱ 5/08 and enterovirus 2/09. On antibioticsⁱ for 2+ years, Valcyte (antiviral drug) for 9 months. On 100 mg doxyⁱ bidⁱ for Cpn, acyclovir for viruses, oxymatrine for enterovirus

 

''Got diagnosed with it about 8 months after diagnosed with MSⁱⁱ. My MS really came to the fore however after trying the Aitkens diet (pre Coeliacs, pre MS). ''

   Horse99 do you mean  aitkens diet with high protein- high fat- low carbonhydrate content triggers MS or celiac disease/ Many doctor in Turkey adv'ce it for MS.

   yilmaz

 

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KEREM'S TAKECARER;

Suspıcıon of MSⁱ (transient nystagmus during conjugated gaze on february 2008, blepharospazms and some optic complaints on february 2009-no plaque on MRI), Vit D3 started 400 IU and elevated to 2000 ıu ın 40 days.

I think Aitkens is absolutely terrible for people with MSⁱ. If you have MS or suspect you have it, you should stick to low saturated fat diet. Aitkens has nothing to do with Coeliac.

Thanks. I think the first step is to get the original blood work, so I can see where I was. I do recall being normal for B12 at that time, that was a few years after testing low for it. So that had normalised over that period.