Links to information on Coeliac Disease

[jjs]

The Quick Reference has a good flow chart to print and take to your GP.
http://www.nice.org.uk/nicemedia/pdf/CG ... fGuide.pdf

I have done a quick copy of the pathway to take if you have symptoms but do not eat a lot of Gluten normally.


Does the person have any symptoms in Box A or B

Yes


Is the person on a Gluten containing diet

No

Is the person willing/able to reintroduce Gluten to their diet ?

No

Refer them to a Gastro Specialist and inform them that it may be difficult to confirm a diagnosis on intestinal biopsy , and that this may have implications on their ability to access prescribed GF foods


Box A
Offer serological testing to children and adults with any of the following signs , symptoms and conditions.

Chronic or intermittant diarrhoea
Failure to thrive or faltering growth ( in children)
Prolonged Fatigue ( "tired all the time" )
Recurrent abdominal pain , cramping or distention
Unexplained iron anaemia or other unspecified anaemia

Conditions

Autoimmune Thyroid Disease
Dermititis Herpetiformis
Irritable Bowel Syndrome
Type 1 Diabetes
First degree relatives ( parents, siblings or children ) with Coeliac Disease




Box B
Consider offering serological testing to children and adults with any of the following

Addisons Disease
amenorrhoea
apthous stomatitis ( mouth ulcers)
autoimmune liver conditions
autoimmune myocarditis
chronic Thombocytopenia
dental enamel defects
depression or bipolar disorder
downs syndrome
epilepsy
low trauma fracture
lymphoma
metabolic bone disease
microscopic colitis
persistant or unexplained constipation
persistantly raised liver enzymes with unknown cause
polyneuropathy
recurrent miscarriage
reduced bone mineral density
sarcoidosis
Sjogren's syndrome
Turner syndrome
unexplained alopecia
unexplained subfertility

[jjs]

[jjs]

August edition of Scientific American has an excellent article on Coeliac Disease. More than 2 million people are affected in the USA - 1 in 100 - but most are not diagnosed yet. Nearly half of the people diagnosed are normal or overweight at the time of diagnosis.

http://www.scientificamerican.com/artic ... R_20090729

The implications of this misunderstood autoimmune disease are mind blowing. Cancers, infertility, depression, osteoporous, vitamin deficiencies ...the list goes on and on... The world's leading scientists are now working to understand this strange genetic and autoimmune condition that affects so many.

[anotherwithpa]

World J Gastroenterol. 2009 February 28; 15(8): 955–960.
Published online 2009 February 28. doi: 10.3748/wjg.15.955. PMCID: PMC2653396

Effect of B vitamin supplementation on plasma homocysteine levels in celiac disease
Muhammed Hadithi, Chris JJ Mulder, Frank Stam, Joshan Azizi, J Bart A Crusius, Amado Salvador Peña, Coen DA Stehouwer, and Yvo M Smulders

http://www.pubmedcentral.nih.gov/articl ... d=19248194

AbstractAIM: To investigate the effect of vitamin supplements on homocysteine levels in patients with celiac disease.
METHODS: Vitamin B6, folate, vitamin B12, and fasting plasma homocysteine levels were measured in 51 consecutive adults with celiac disease [median (range) age 56 (18-63) years; 40% men, 26 (51%) had villous atrophy, and 25 (49%) used B-vitamin supplements] and 50 healthy control individuals matched for age and sex. Finally, the C677T polymorphism of 5,10-methylenetetrahydrofolate reductase (MTHFR) was evaluated in 46 patients with celiac disease and all control individuals.
RESULTS: Patients with celiac disease and using vitamin supplements had higher serum vitamin B6 (P = 0.003), folate (P < 0.001), and vitamin B12 (P = 0.012) levels than patients who did not or healthy controls (P = 0.035, P < 0.001, P = 0.007, for vitamin B6, folate, and vitamin B12, respectively). Lower plasma homocysteine levels were found in patients using vitamin supplements than in patients who did not (P = 0.001) or healthy controls (P = 0.003). However, vitamin B6 and folate, not vitamin B12, were significantly and independently associated with homocysteine levels. Twenty-four (48%) of 50 controls and 23 (50%) of 46 patients with celiac disease carried the MTHFR thermolabile variant T-allele (P = 0.89).
CONCLUSION: Homocysteine levels are dependent on Marsh classification and the regular use of B-vitamin supplements is effective in reduction of homocysteine levels in patients with celiac disease and should be considered in disease management.
Keywords: Celiac disease, Homocysteine, Vitamin supplements

[kimks mom]

From this link:
http://www.pubmedcentral.nih.gov/picren ... obtype=pdf

Of the 73 subjects, 63 had abnormal fingerprints-21 men (10 on gluten-free diet) and 42 women (31 on gluten-free diet). Ten patients had normal prints-four males (three on gluten-free diet) and six females (five on gluten-free diet)-seven were children. The abnormalities found were as follows:
(1) ridge atrophy, with the appearance of white lines (see below), and (2) further ridge atrophy, with loss of visible ridges and disappearance of white lines.

There are pictures in the article that show the lines in the fingerprints.

To rule out weight loss as a cause of ridge atrophy, we took fingerprints from 40 patients with wasting diseases (carcinomatosis, leukaemia, steatorrhoea not due to coeliac disease, Grohn's disease, ulcerative colitis, thyrotoxicosis, cirrhosis, and protein-losing enteropathy). Even a patient who had lost 8 st. (51 kg.) in weight had normal prints recorded at necropsy.
Patients with iron-deficiency anaemia, folate-deficiency anaemia, and pernicious anaemia all had normal fingerprints.
The improvement in fingerprints after treatment with a gluten-free diet has been started appears rapidly and is easily detected within a month. Ridge atrophy seemed to precede clinical deterioration by some weeks in the few patients whose fingerprints were taken frequently enough to show such changes.

[jjs]

[jjs]

Increasing prevalence and high incidence of celiac disease in elderly people



Celiac disease is a common disorder affecting more than one percent of the population in the Western world [1]. Serologic screening enables detection of individuals with atypical or subtle symptoms, or even symptomless cases [2]. The condition is often assumed to involve children and young adults. On the contrary, we recently revealed a high number of both diagnosed and undetected celiac disease among elderly people [3]. It remains obscure whether the number of undetected cases in the elderly is due to diagnostic delay, or to the development of celiac disease at an advanced age, or both. The question is important in contemplating whether celiac disease should be actively sought in elderly people, and whether seronegativity could exclude celiac disease once and for all. The aim of this study was to show the current prevalence and incidence of biopsy-proven celiac disease in individuals over 55 years of age. Given the high specificity of serum endomysial (EmA) and tissue transglutaminase antibodies (tTGA) for overt or forthcoming celiac disease, the frequency of seropositivity was likewise investigated.

http://www.biomedcentral.com/1471-230X/9/49

[jjs]

http://www.celiacnurse.com/wp-content/u ... cklist.pdf

[jjs]

There are more than 300 symptoms of celiac disease, and symptoms may vary amongst different people. One person might have symptoms of diarrhea and abdominal pain, while another person has irritability or depression. Some patients develop celiac symptoms early in life, while others feel healthy far into adulthood. Some people with celiac disease may not show any symptoms. These differences can make celiac diagnosis extremely difficult resulting in 95% of celiacs undiagnosed or misdiagnosed with other conditions. Do you have celiac? Take our celiac disease symptoms checklist »

Left untreated, people with celiac disease can develop further complications such as other autoimmune diseases, osteoporosis, thyroid disease, and cancer.

http://www.celiaccentral.org/Celiac-Dis ... mptoms/32/

[peony]

Hey everyone - I feel so stupid - I had that burning, itching rash all over my legs - like someone set me on fire..then I couldn't get a fingerprint ID at work because the machine couln't read my fingertips! The receptionist decided I must be a ghost (mindyou, I used to feel like one for all the notice my GP used to take of me! ) then I noticed I was getting really bloated and crampy whenever I ate porridge for breafast-bemusing at first - it's meant to be so healthy, isn't it? The penny finally dropped - I get there in the end! - and I stopped the gluten for a week. Then I ate a tiny bit of baguette and oh deary me! Let's just sayI had full value out of my bathroom and draw a veil over the rest! I was also very sweaty and shaky and woolly-headed.

So I think I know where I am going with this. I am so grateful for all the info here, but what I would like to know is whether I should try to keep a bit of gluten in my diet until I get tested and then which test to go with. I am going to make a cup of tea and read through all the info here again, plus look at the Coeliac Society, but if anyone can speak from personal experience on what might be the best way to go,that would be fab. Thanks,
Peony

[jjs]

I eventually had a Coeliac genetic test as by this time an endoscopy would not have been accurate. I have the Coeliac gene which means I probably have Coeliac... Many Drs now say Gluten Intolerance and Coeliac are the same thing anyway.

In the UK you can get GF food on prescription IF you are dxed correctly. So - I would say that it even more important for you to stay on gluten, get the tests and be dxed officially.

But if the blood test is inaccurate you may have to take matters into your own hands and eat to live.

Good luck! I am finding more and more recipes all the time... must update the Recipe page ...

[peony]

Thanks Jane - I am dreading another trip to the GP-this one not too bad,but all the same they make it pretty plain that anything I consult them about is a figment of my diseased imagingation. Included some gluten today and don't feel fab on it,but will book an appointment in the morning.My worry is if the blood test shows negative-it will be very difficult to persude them to look further. oh well-I'll cross that bridge when I come to it! It could be the final piece in the jigsaw....

[jjs]

I know what those GP looks are like

You could always try to get the rash dxed. Dermatitis Herpetiformis is specific to Coeliac and a dx of DH overrules any Coeliac testing. You need a Dermatologist with experience in DH... maybe ask the Coeliac Society? They may have a list of experienced Dermatologists.

The gene test is good too ... IMO a rash as you describe, symptoms as you describe + a Coeliac gene would 'be' Coeliac... but it would nice to be formally NHS dxed as well...

[peony]

[peony]

Not for the faint-hearted, but here is a link to some pictures of DH http://www.dermnet.com/Dermatitis-Herpetiformis

Just in case any one is wondering what it looks like or if they have it.

Hope it helps