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Misdiagnosis Of C.f.s. Could It Be Celiac?

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Hi there,

I have been browsing through the forum for a good few weeks now and found it to be very helpful and informative, and thought I would post my story (so far!) on here as I could really do with some advice if possible.

This may a long post so please accept my apologies in advance :unsure:

I am 34 year old married mum to two boys and I became ill in early 2005 with the following symptoms;

EXTREME FATIGUE...MUSCLE PAIN/ SPASMS/ TWITCHES.....PINS AND NEEDLES....NUMBESS IN CERTAIN PARTS OF THE BODY ...TINGLING...ANXIETY..HEADACHES..SORE GLANDS/THROAT...BRAIN FOG..ITCHY SKIN...MOUTH ULCERS...SORE TONGUE..SINUS PROBLEMS.....STOMACH PAINS..CONSTIPATION/DIAROHEA....

Phew! i sound i real handful..and i'm sure i've missed some symptoms out :rolleyes:

After 6 months of all the usual blood tests, i was diagnosed with CFS and Fibromyalgia by the GP at the time.

I had been poorly previously to 2005 with a few things, but the above symptoms cam on quickly in the space of a couple of weeks after a viral infection I picked up a few weeks earlier.

The previous health problems I had before 2005 were

Asthma...mostly outgrown now

Allergies...Hayfever and certain animals

Bad Migraines..since I was around 6 years old

Anaemia..on and off over the years

I also had a major operation a week after giving birth to my eldest son when I was 19 years old. It was discovered that I had a huge cyst the size of a football attached to where I should have had my left kidney, this was removed and discovered the kidney had disentrigrated apparently, and after the removal of the cyst, no further problems since.

Family History

Maternal Grandmother Thyroid Disease/ Stomach Issues

Mother-Thyroid Disease/ Arthritis Psoriasis/ Suspected A.D.H.D./ Ulcers GERD

Identical Twin Sister. Kidney stones since a child and Psosriasis

My eldest son who is 16 has A.D.H.D and tooth enamel defects (milk teeth then Permanent teeth) re-acurring mouth ulcers and foul smelling poo (sorry TMI!)

My youngest son who is 6 has allergies, mild asthma, tooth enamel defects on milk teeth and new permanent teeth coming through have markings on.

Thanks for staying with me up to now....

I came across Celiac disease whilst doing research on Vit B12 deficiency as after some recent bloods that were done it appeared that i was very low in this and ferritin, and folate too. I have been having monthly jabs of B12 and now they are being stopped as my levels were very high.

To try and tie up the post it all seems to make sense to me, my family history of autoimmune disorders, etc.that i may have celiac disease.

I asked my new doctor to do a blood test for celiac and he agreed, but it came back negative, luckily he is aware this can happen and he has arranged for me to have an appt with a gastrentologist ( my spelling is terrrible sorry- i blame it on the brain fog :) ) And I have an appt at our local hospital at the end of October.

I am really struggling with my symptoms at the moment ..i know I cannot go gluten free until i had had biopsy, but im really noticing whats happening after eating certain foods, and now my mum has secondary cancer, my son with A.D.H.D wants to leave the college he has just started..i just feel overwhelmed with it all, and i am struggling to stay positive.

I know this post may sound a bit all over the place, i just could do with some advice on what to do..i've made an appointment to see my doc in two days time, as I have been told he can ask for my appt at the hospital to be brought forward if necessary...i'm just sick of being sick. :(

Thanks for reading, hope i haven't depressed anyone...

Mel

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Oh, you poor thing... you do have a lot to cope with. I can't offer much advice but you sound like you may be from the UK, as I am, so I wanted to say hi :)

I hope your doctor can move your appointment forward - my appointment took a while but the gastroenterologist did fast-track my biopsy, so ask for that too when you see yours. As you know, you need to eat gluten until then but in the meantime, I would suggest keep reading about coeliac disease so that you're really well-informed, because even the specialists often aren't. As soon as the biopsy is done, go gluten-free and see if that helps. Even if the biospy doesn't show anything, it could be a false negative result or you could be gluten-sensitive but not coeliac. With all you've had going on, the gluten-free diet is worth a try.

As you've probably seen, people on here are so helpful and willing to share their experiences, so do keep reading and posting :)


Self diagnosed but confirmed by biopsy

Gluten free Jan 2010

MSG free Jan 2010

Corn free Apr 2010

Soy free Jun 2010

Following a FODMAPS plan

Also have RSI, widespread myofascial pain and hypermobility problems

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I sure do hope you get this all figured out. Your symptoms sound very unpleasant.

Good luck getting the biopsy fast-tracked. I think that's the absolute best thing you can try for, as you can go off gluten as soon as it's done. YI'm really glad to hear you're working with a doctor who knows the blood tests can come out false negative.

You should try the diet because some people with a lot of neurological symptoms don't make the same antibodies as more typical celiacs or even have a lot of GI damage. We really don't have good tests for neurological forms of celiac. Trying the diet is the best way to find out if your symptoms are related to gluten.

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You do sound like your in the right place. Keep on gluten until your testing is done and you can call the GI doctor and ask to be put on the cancellation list so if someone else cancels their appointment at the last minute they can slide you in. With the symptoms your kids have it might be a good idea to ask their ped to do a blood test on them also. Sometimes the kids will be positive on the blood work even if one celiac parent isn't. That happened in my family.


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)

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 in time with proper diagnosis of Celiac November 2002

 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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You do sound like your in the right place. Keep on gluten until your testing is done and you can call the GI doctor and ask to be put on the cancellation list so if someone else cancels their appointment at the last minute they can slide you in. With the symptoms your kids have it might be a good idea to ask their ped to do a blood test on them also. Sometimes the kids will be positive on the blood work even if one celiac parent isn't. That happened in my family.

Hi there,

Thanks to you all for for replying..it's much appreciated and makes feel not quite as alone at the moment :)

India.. Yep i'm from UK ..Hi to you too!

I've been back to docs today and have been referred to a Rhemetologist regarding possible thought on me having PSORIATIC ATHRIITIS, with my mum having it and also my twin having psoraisis.

There is a strong auto immune link in the family, luckily she still thinks I need to see Gastro Doctor regarding Biopsy as knows there is a link with these conditions and Celiac Disease.

I will definately ask about fast tracking Biopsy and put myself on cancellation list. I'm getting more desperate by the day to get some answers, will mention the symptoms that my two boys have too when I see Gastro Doctor.

Thanks so much again, its nice to know people are there when you need some support and advice, :)

Best wishes to you all,

Mel x

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