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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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Hi, I joined the other day & a few of you have already responded to some of my posts and I have found reading your posts very heart warming. I have been fairly gluten-free for two and a quarter years. Before I went gluten-free the doctor said I should go gluten-free. He didn't order biopsies/endoscopies. He refuses to call it celiac disease. I have experienced extreme bad nerves all my life, extreme emaciation till I was over 25, extreme stomach aches, head aches, ear problems, etc. All rather improved for the last two years. I am about to be sacked from my job for a moderate amount of absence whereas 17 years ago I was off work for almost a year and they kept me on. I live outside the U.S. therefore all the laws and regulations will be different but the bodies are the same. What my query is is this:

- As I am about to start cramming with gluten which I know, will damage me and make me ill, how long is it to be expected that I be kept waiting for the endoscopies and biopsies which I am going to demand - does it usually take days, weeks or months to organise and go down the waiting list?

- I have been advised by another doctor not to do this but I can think there is no other way to end this constructive exclusion. Considerable documents have circulated that I invented illnessses.

- How little gluten can I use and for how long during this period?

- I received a letter informing me I was being expelled from my nearest "celiac disease support group" for this blunder of the doctor but I spoke firmly to the telephonist who reinstated my membership (membership susbcription, strangely, is not charged). Unfortunately they have announced a sort of ban on any members discussing the kind of questions I am obliged to resort to this kind of bulletin board to raise.

Thanks for being there,

Desperate for your answers

Michael.

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Maybe you should start looking for another doctor... maybe someone that will test you.

He didn't order biopsies/endoscopies. He refuses to call it celiac disease.

It seems like your current doctor isn't much help.

I can't tell you what to do but if I were in your situation, I would find another doctor or keep bugging my current doctor until he listens. From my experience (I live in Canada) it takes awhile to get in to a GI specialist and then once you're in it sometimes takes even longer to get an endoscopy. For me it was 2 months to wait for an endocopy and biopsy and I had to really push to get in that soon! (They wanted me to wait another month!).

If you're really keen on glutenizing yourself maybe ask a nutritionist/doctor for advice on how to go about it.

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I had a problem with my doctor not listening as well. I came home very frustrated one day and sat at the computer and wrote a letter to him, letting him know that I felt I wasn't being heard. Then I listed everything I wanted to tell him in the letter. And this is the important part :o I MAILED it to him. So ... he actually had to sit down and read it. That was a couple of years ago. Since then I have a very attentive doctor every time I go in! Oh ... and yes, the problem I had at the time was soon diagnosed and is being treated :P

Hope this helps!

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They usually say 3 months being on gluten to get positive results but everyone is different and some people go in a shorter amount of time and you must eat a lot of gluten during the time.

I had to switch doctors a few times to get someone to listen. Sounds to me like you need a new doctor. Does your doctor really know about celiac?

If you know you feel better on the gluten-free diet then do you really need an "official diagnisis"?

Good luck with everything and hang in there :D

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HI, Michael,

Is your GP now prepared to send you for blood tests and an endoscopy/biopsy, or do you know of a GP that will do this for you? It's just that it would be really rough to get yourself all 'glutened up', only to find no GP will refer you. (I suppose the alternative is to go 'private'?)

I'm still waiting for my GE consultant appointment and expect to wait awhile after I've seen him/her before the biopsy will happen. (Been told by friend who works at the GE clinic it could take as long as 17 weeks to see consultant, but GP has promised to chase it for me if I don't hear within the next few weeks.)

So I guess my answer is : it looks as though it may take a very long time - definately NOT days, definately a lot of weeks, and possibly months.

Sorry not to have more positive news!

And keep as well as you can in the situation that faces you:)

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Friends,

Either I don't get any reports at all and sick leave targets at work will get too inflexible, or I make myself too bad like some of you were warning against.

The only way in seems to be straight in.

The question is like a plane on the runway, how long to taxi around and when to blast off and - perhaps - soar through the clouds.

Unlike some of you I think I'm one of the ones that will take years to get steadily better.

Starting from scratch with another GP will probably be like going back behind the start line altogether. PALS have advised against it and I know they are right.

As for the gluten ingestion phase it will have to be very short and very intense because otherwise I'll be too ill for too long and obviously no-one will back me up for being ill.

With all your dazzling insight into how this damage thing works, does the damage come on quicker the more gluten one eats or will there be a delay in it showing up?

This has got to be a sick society with all these people posting here about damaging themselves. I have noticed others doing it! I was warned by another doctor not to do this but then I'll not have any reports at all.

Doctors don't use their insight into the human body, perhaps they don't have any, it's only ever about lawyering, trade marks, and initiation into schemes.

Perhaps this gut damage thing is overrated. Especially, the intestinal aspect is a mere sideshow. The main action of this disease is an autoimmune attack according to other websites and it's going to take the rest of my life to slow that down like the proverbial supertanker.

Michael

Very badly confused indeed and kept that way for too long by those I rightly looked to - and was proved wrong to do so.

Is this the right face for it?

:ph34r:

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Different continent

Same problems

M.

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A heartfelt thank you to all of you for helping me through this stage.

Very best of wishes.

Michael

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    • Ironictruth, I think that is a very insightful thought. since different antibodies present for different body systems all the ways gluten affects the body is still not well understood. Here is a case of presumably someone who had the gut damage of a celiac but also had neurological damage. http://www.nature.com/nrneurol/journal/v3/n10/full/ncpneuro0631.html entitled "A case of celiac disease mimicking amyotrophic lateral sclerosis" so it has happened in the literal but since this is not well understood people don't make the connection today. I would also point you to this hindawi article on the "Lesson's learned from Pellagra" but I am afraid we haven' learn't yet. https://www.hindawi.com/journals/cggr/2012/302875/ notice specially the 2.1 section clinical feature of pellagra and all the neurological symptom's once associated with a Pellagra patient. quoting "The neurological manifestation did not stop there because other degenerative conditions, such as an amyotrophic lateral sclerosis-like picture, were described, with fasciculation of the tongue and upper and lower motor neuron signs. Cerebellar syndromes occurred and vertigo was frequent. Headaches, sensory and pain syndromes, epilepsy, and involuntary movements were noted as well as sleep disturbances. Cord lesions were also seen, as was optic atrophy, so there were multiple sclerosis (MS), like variants." which tells me doctor's don't recognize pellagra today when they see it because they haven't seen it in 75+ years. ***this is not medical advice but read the hindawi journal on lesson's learned and I think you will see yourself in their many descriptions of all the way Pellagra presents itself to doctor's and patients still suffering today and you can see why it (like celiac) is hard to pin down today because it presents in so many ways it can be soo overwhelming and since vitamins are not a focus anymore today (especially b-vitamins) that today I believe we are doomed to repeat history's lessons unless the current generation learns again all the ways pellagra presents itself today. good luck on your continued journey. posterboy by the grace of God,  
    • after going gluten-free I felt great! but lately I have been feeling bad. the gluten symptoms are still gone, but now I am weak, foggy,  any ideas? doc did a full blood work up, all came back normal
    • Estes, I want to respond to your question might it be Pellagra instead? It might be but it will be hard to prove by testing. See my response to this question from an earlier thread. The in International Journal of Celiac disease noticed this connection in 58% of Celiac's. Here is the link http://pubs.sciepub.com/ijcd/3/1/6/ quoting  (My words Pellagra is) "Considered now as a vitamin deficiency state, pellagra has been linked to a chronic lack of niacin (vitamin B3 or nicotinic acid), an important constituent of coenzyme I and coenzyme II. Its clinical map is believed to include the classic 3 Ds: Dermatitis, Dementia and Diarrhea. The order of appearance and severity of these three sub-syndromes varies and some may not show at all."  and their note  that "Unfortunately, the patient was not diagnosed biochemically as pellagra and died before gluten free diet was initiated." and also notice this research as first pointed out by Knitty Kitty https://www.ncbi.nlm.nih.gov/pubmed/2084620 People who had pellagra and esophagitis showed improvemnt in their condition in only a week of supplementation. But they stopped too soon. The ajcn link quoted in an earlier response noted clinical remission after 3 weeks of 3/day supplementation with Niacinamide plus a B-complex and a high quality niacin containing food regimen for 3 more months to ensure complete remission. Here is the link again. http://ajcn.nutrition.org/content/85/1/218.full the problem most people have today most people wont take a vitamin that long (3 months) or that frequent (2 to 3 daily) to completely recover. but we know even if you take a  b-complex with as little as 100mg Niacinamide 3/day for a month many of our GI problems will improve because it is the clinical response to the vitamin that confirms the diagnosis. I think of a 3 month cycle as more cautious to avoid someone relapsing back into sub-clinical pellagra but if that is too aggressive in your mind then take it (Niacinamide) for only a month 2 to 3/daily to see if it doesn't help is worth a try  I think. My experience with B-vitamins tells me 3 months is ideal because that repletes our storage sites in the liver.  You should probably take this/is (Niacinamide) with a B-complex so as too keep your other B vitamins in balance as well. ****** this is not medical advice but I hope it helps you the way it did me. good luck on your continued journey. 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. posterboy by the grace of God,  
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