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Calling Expert Celiacs!


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29 replies to this topic

#1 KatieTattie

 
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Posted 29 November 2011 - 11:45 AM

Hi all! Before I start I'll just say what a great supportive site this is!

I'll try and make my history as short as I can but as I'm sure you've all experienced I've been ill for a long time with no conclusive diagnosis!
I basically want to know what you all think about my medical history and whether you think I may be celiac.



Stomach, bowel pains, cramps only after eating when a child (started about 8 years old).

As a teenager the same pain and cramping after meals but massive weight loss/fatigue/depression. Dr diagnosed IBS without any tests being performed.

When at hit around 22 things got a lot worse, for about 18 months I was in so much pain with stomach cramps, loose bowels, weight loss, fatigue. I went to a GI who ordered lots of bloods (which included celiac) all came back negative. He ordered a colonoscopy which was incredibly painful (I consider myself pretty good with pain after my horrible bowel cramps)all looked normal but biopsy showed microscopic colitis. I asked what this meant and he said it was probably from an infection and that it could not be autoimmune crohns/UC. So again IBS was diagnosed.

Fast forward to the present, I am now 29 and had a baby 6 months ago. About 8 weeks after the birth the old stomach pains returned, it felt like my insides were on fire! I thought OMG here we go again another 'IBS' episode! Thinks got worse though, I'll list my symptoms:

Stomach pains
Loose bowels/cramps (worse than childbirth with no drugs which I did!)
Back pain
Head aches
Face swelled up (couldn't see through one eye swelling was that bad!)
Heat rash on joints
itchy skin
Joint and muscle pain
Eye pain
I lost 35lb in 8 weeks
Heart palpitations
Extreme fatigue

Anyway I went to numerous drs and had lots of bloods/ultra sounds everything negative apart from thyroid function. My thyroid was overactive but thyroid antibodies came back normal. Endo said it was just unfortunate and I probably had a virus which through my thyroid out of balance and it would 'sort itself out' Guess what 4 months later it hasn't!

Back to the endo I went and he did more tests, my adrenal function test came back borderline as did my acth level.

ANYWAY! heres my question: I was told by a nurse over the phone that my IGA antibodies have come back at 3.8 (ref range 0.8-2.8) she said she doesn't know what that means and that the endo with see me in the new year!! I've searched the net and celiac seems to keep coming up. What do you guys think?

I have gone gluten free for 3 days now and think I actually feel a bit better, no loose bowels at all but still in a bit of pain. I'm due to see an Immunologist in 2 days and would be really grateful for your wisdom so I can go armed with information and questions for him.

Please help me figure this mess out! I'm in such a state and being a new mum it has been a living hell trying to find out whats wrong with me!

Thanks you
Katie x
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#2 Gluten Free Traveller

 
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Posted 29 November 2011 - 12:10 PM

Hi Katie!

I hope we can help you to feel better!

In reading your symptoms it sounds as though you could certainly be celiac. I suffered from many of these things myself before being diagnosed. The stomach pains, terrible bowel movements, extreme fatigue, weight loss and some of your other symptoms are text book of celiac disease. Whilst I'm sure many other things present the same symptoms celiac disease sounds like a prime candidate.

If your IGA levels are high this again suggests and autoimmune disorder such as celiac.

You say you have gone gluten free for 3 days and you feel better? Have you tried a gluten-free diet in the past or is this the first time? If you are celiac and you go 100% gluten-free it will take a while to get completely healed but you should start to feel better and better, often right away.

Have you ever had the celiac biopsy to check if your villi are damaged? This would normally be the next step but you would have to be eating gluten for results to come back positive as if no gluten is eaten no damage will be being done and it may show a false negative.

For me being dx as celiac and never eating gluten again made all my horrible symptoms go away....I hope for the same with you!
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#3 KatieTattie

 
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Posted 29 November 2011 - 01:11 PM

Thank you so much for replying! Yes this is my first time trying gluten free. Its been very strange to say the least, I've been in so much pain for so long its strange to feel movements in my abdomen without the burning type pain. The most major improvement has been my joints, its shocking how after only two days off gluten I woke up and my joints felt lovely! I just laid there moving my hands and feet and stretching them out! ha!. I still have a bit of pain but its more of like the type of pain you feel when a burn or wound is healing if that makes sense. I've had slight constipation also since going on the diet is that pretty normal?

I haven't had a small intestine biopsy yet, don't even know what the consultant thinks about these antibody results yet as they take so long at the NHS!

I'm just so confused about these antibody results, I didn't even know what tests he was doing and to be honest I still don't know exactly! All I know is that my IGA antibodies were 3.8 (ref range 0.8-2.8) Do you think this is a good indicator of celiac? The only other thing I can find on the net about IGA is cancer! god forbid!
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#4 captaincrab55

 
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Posted 29 November 2011 - 01:17 PM

Heat rash on joints
itchy skin
Joint and muscle pain
Eye pain
I lost 35lb in 8 weeks
Heart palpitations
Extreme fatigue

What do you guys think?

I have gone gluten free for 3 days now and think I actually feel a bit better, no loose bowels at all but still in a bit of pain. I'm due to see an Immunologist in 2 days and would be really grateful for your wisdom so I can go armed with information and questions for him.

Please help me figure this mess out! I'm in such a state and being a new mum it has been a living hell trying to find out whats wrong with me!

Thanks you
Katie x
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Katie, Sounds like you may have Dermatitis Herpetiformis too... One may need to do a stress test slso...

Hope you feel better soon..
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I'm a New Man Without GLUTEN!

#5 KatieTattie

 
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Posted 29 November 2011 - 01:39 PM

Thanks for your reply captaincrab! What is a stress test? I am seeing an immunologist on thursday but again with it being the NHS have no clue as to what expect from the consultation. I eat out today for the first time since going gluten free and chose a jacket potato with cheese and a coffee, withim 10 minutes my hands were tingling and went red and blotchy. I also got a rash between my fingers and my heart was racing. Do you mean exposing myself to gluten when you say stress test? or skin prick test? or something else? Many thanks
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#6 captaincrab55

 
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Posted 29 November 2011 - 01:54 PM

Thanks for your reply captaincrab! What is a stress test? I am seeing an immunologist on thursday but again with it being the NHS have no clue as to what expect from the consultation. I eat out today for the first time since going gluten free and chose a jacket potato with cheese and a coffee, withim 10 minutes my hands were tingling and went red and blotchy. I also got a rash between my fingers and my heart was racing. Do you mean exposing myself to gluten when you say stress test? or skin prick test? or something else? Many thanks

Stress test on a Tread Mill to find out what may be causing those Heart palpitations...
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#7 Di2011

 
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Posted 29 November 2011 - 02:06 PM

Can you describe your itchy skin? Where does it happen? What does it feel like(itch, burn, sting or some other description)? What does it look like? Is it different on different parts of your body? Anything seem to relieve it? Do you have any other skin problems? Face/scalp? Do you even get unexplained ingrown hairs?

I would ring the endo and ask to speak to them directly. Remember this: those results are yours. Now.. not next year. You need to get their interpretation and a COPY of those results (for other specialists etc) and then get back on here with the details.
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#8 beebs

 
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Posted 29 November 2011 - 02:30 PM

Hi Katie,

If you want a diagnosis then you need to keep eating gluten as bad as it is. Otherwise your tests will come back negative wether you are Celiac or not. I cannot believe - with your symptoms that you haven't had an Endo. Do you have a GI? If not you need one, ring your Coeliac society and ask for their recommendations as to who is the best in your area for Celiac.

Often when we go gluten free our reactions become far more severe, so if you did go gluten free and then wanted a diagnosis you would have to do a gluten challenge and that is sometimes impossible to take after being gluten free. Thats what happened to me, went gluten free and now if I eat it I end up in emergency - and now I will most likely never get a diagnosis even though I want one! Doh!

If however you don't feel like you need a diagnosis (as alot of people don't) they just feel better gluten free, just be prepared that you may not get a diag if you change your mind after going gluten free. Some people can tolerate the challenge and some can't. Its really up to you how you feel.

Good luck - I hope you get it sorted asap!
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#9 mushroom

 
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Posted 29 November 2011 - 02:43 PM

Yes, I'm afraid if you really want to get to the bottom of things you do need to keep on eating gluten or the antibodies will depart your blood stream and your small intestine will start to heal and diagnosis will be impossile, especially if you have to wait for the new year. Why so long? if you are already under the care of an endo?

If he ran only IgA antibodies (and we don't know this - you need to go to the doctor's office and get a copy of your test results to find out what you were tested for and what your results were (BEFORE the New Year!), then there are other tests that should be run. And they can just be ordered by the doctor without your having a visit - in fact if you haven't had them he would need these results before your visit :rolleyes: if the visit is to be worthwhile. For us to give you any real advice you could post these results on here and there are lots of posters who can help you analyze these and figure out where you need to go from here.

It is a shame that your enjoyment of your new baby is being marred by all this. The sooner it is resolved the better. :)
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#10 Katrala

 
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Posted 29 November 2011 - 03:37 PM

What area of the country (if in US) do you live in? There may be a good doctor someone can suggest.
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#11 Gluten Free Traveller

 
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Posted 29 November 2011 - 05:25 PM

She is in the UK. She spoke about the NHS. It takes longer to see specialists but at least it's free :)
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#12 sandsurfgirl

 
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Posted 29 November 2011 - 10:10 PM

She is in the UK. She spoke about the NHS. It takes longer to see specialists but at least it's free :)


I'm not sure it's free. They just pay for it in other ways like tons of taxes. ;) And they suffer when they can't get to the specialist forever or at all.

It really all depends how important it is to you to get that official diagnosis. There are plenty of people who only had high IgA and every other celiac test was normal and they went gluten free and had huge improvement of symptoms. But the gluten free diet is complex and you have to do it right. You won't get better if you don't do it all the way and go completly gluten free.

In terms of your adrenal function, are they looking at Addison's for you? Which hormones were low? I have hypoaldosteronism, not Addisons. My cortisol isn't low, just aldosterone and rennin. I'm on Florinef.

Personal question, do you pee a lot? Have you ever done a 24 hour urine collection and did you pee way more than they expect? Usual output is 1 to 2 liters. The reason is that with low aldosterone you can have salt wasting where you kidneys dump your salt and then your water follows. That can cause heart palpitations and all sorts of other symptoms. I was hospitalized for 10 days due to this in early October.

Keep on them about the adrenal function. It's important.
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Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.
Ready to get well and get on with my life!

#13 GFinDC

 
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Posted 29 November 2011 - 10:14 PM

There have been a couple of women post about having reduced symptoms during pregnancy. It sounds like you had the same thing. Your immune system acts differently during pregnancy and that may reduce your GI symptoms. I don't know if any doctors would recognize that as a diagnostic tool though. A little too obvious I guess...

I believe you can claim some kind of tax exemption for gluten free food in the UK, but need a diagnosis to do it. I am not so sure the tax expemption is worth while though. The best way to start gluten-free is to avoid processed foods and stick with whole foods cooked at home. And not buy lots of gluten-free processed foods, at least for a month or two.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#14 beebs

 
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Posted 29 November 2011 - 10:18 PM

I dunno sandsurfgirl - we have a thing here (Australia) called medicare here where you get 80% back and then it goes up to 90% once you reach a threshold and our taxes aren't much higher than yours at all. :)
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#15 KatieTattie

 
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Posted 30 November 2011 - 02:21 AM

Thank you all so much for your replies. I'll try to answer some of your questions!
The rash that I get tends to be like heat rash nothing seems to ease it then all of a sudden it goes for months! recently however I have started to get all sorts of skin issues, I have like a dermatitis type rash in between my fingers and cracks on the tips of my fingers which bleed. My hands become blotchy and hot also.

I used to be a real advocate for the NHS it used to be fantastic, unfortunately my experience over the past 5 months how been anything but good. I've already spent 5000 (approx $10,000) private to try and speed things along but have now ran out of money!

Yes I have had my adrenal gland checked which came back borderline low and my ACTH level was low but no one has seemed to address any of this! My thyroid is still hyper and the endo is still saying I need to wait and see if it balances itself out!
I believe that I have celiac disease and that it has gotten so bad that its having an effect on my endocrine glands, what does everyone else think? thanks
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