Calling Expert Celiacs!

[KatieTattie]

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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[Gluten Free Traveller]

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!

[KatieTattie]

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!

[captaincrab55]

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..

[KatieTattie]

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

[captaincrab55]

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...

[Di2011]

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.

[beebs]

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!

[mushroom]

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 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.

[Katrala]

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

[Gluten Free Traveller]

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

[sandsurfgirl]

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.

[GFinDC]

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.

[beebs]

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.

[KatieTattie]

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

[Di2011]

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.

Hi Katie (I presume that is your name?),

I've had a load of skin issues that are resolving with my diet change. I had problems for years, blackheads, probable milia, cracked hands etc (always thought/felt I was dehydrated despite plenty of water and minimal caffeine).

How would you describe the "dermatitis/rash" between your fingers? Is there bumps/lumps or more like traditional rashes (significant amount of skin red/blistery) or something else? Or both? I use google images regularly so if you google "skin rash" versus "dermatitis" you get a different set of medical site results.

When you say your hands are hot do you mean like hot to touch? ie if someone else touched your hands they would describe them as hot? Or they feel hot to you? Could you describe any of your skin problems more specifically ? My DH often feels like (without any specific look to it) like acid on the skin.. hard to describe with usual skin problem vocabulary. But could be "hot" or what I read more commonly on hear is "stingy". Not necessarily what you are describing but worth a thought.

[KatieTattie]

Hi diandliam, yes my name is Katie! Thanks for your reply. The heat bump type rash is always on my feet, knuckles, knees, elbows and chest. This recent skin issue between my fingers does look like a contact dermatitis type rash but I have not been in contact with any irritants that I know of. The cracking on my finger tips is getting worse now and I also have cracks in the corner of my mouth. I have also started with a few small boil type things around my bikini line (not ingrowing hairs or stds) The hot feeling I mentioned is like a stinging, burning pain and also feels hot to the touch. In the past I have just put this down to thinking I had sensitive skin but I'm not so sure now as products never bother me. I have also started with dark circles under my eyes which I never had before (maybe I'm just getting old lol!)

[Gluten Free Traveller]

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.

Why do Americans always think British folk pay more taxes? US and British taxes are pretty much the same, it's just that each country spends them very differently. I'm Scottish but currently live in the States. I was diagnosed in the UK 2.5 yrs ago. Lots of blood tests, gp visits, gastro visits, scans, biopsy, all that jazz..all free.

[captaincrab55]

Why do Americans always think British folk pay more taxes?

Would that be North, Central or South Americans??? LOL

[Gluten Free Traveller]

Would that be North, Central or South Americans??? LOL

Nice one! Generally but not limited to many people from the USA

[KatieTattie]

I do think the NHS can be wonderful and I truely believe this country would be worse off without it, but my personal experience recently has been far from good. Scotland seems to be getting it right though don't they as does Wales! England (where I am) seems not so together. I don't mean to sound ungrateful in my posts when I've had a pop at the NHS but my particular borough have been worse than useless which has damaged my life more than I can describe especially with having a newborn to look after when I was really bad. I feel sorry for the front line workers in the NHS being bound by administration big wigs. I just think the waiting lists are so long it can actually endanger peoples lives. Anyway enough of that! I'm going to be signing up for private cover after all this is over.

[KatieTattie]

I can't even express how angry I am after seeing this immunologist! I really am at breaking point with doctors! Cab anyone figure out these recent blood results for me please?

IgG- 11.94 (6.0-16.0)

IgA- 3.4 (0.8-2.8)

IgM - 1.05 (0.5-1.9)

ANA Anti nuclear Antibody- Hep 2 Positive homogeneous

I went to see this immunologist thinking that my endo might have ordered me celiac tests and it look like he hasn't done the relevant ones needed. So I'm no closer to a diagnosis and have no clue as to whats wrong with me again!

The dr said not to worry about the out of range results as 'some people are like that'! when I said well I don't feel well so obviously theres something wrong he just smirked at me and said 'there's nothing wrong with you, you might have had a virus'

Anyone any ideas?

Have I even had the right tests for celiac? or should I just go back on the bread and forget about all of this! sorry just so wound up about all this!

[navigator]

I'm Scottish but currently live in the States. I was diagnosed in the UK 2.5 yrs ago. Lots of blood tests, gp visits, gastro visits, scans, biopsy, all that jazz..all free.

I'm also Scottish and as such had all blood tests for coeliac, thyroid, diabetes, folates and vitamin deficiences done free without having to request them and with no hold-ups. I also had dexa scan, endescopy, biopsies and ongoing GP and hospital consultant appointments free. I also as a coeliac get basic gluten free foodstuffs on prescription and in Scotland there is no charge for prescriptions.

Katie Tattie, I'm sorry that you've had such a rough time and have had real difficulties within the NHS. I've been lucky - GP ran all blood tests and referred me for Dexa scan without me having to ask. I only waited a couple of weeks for my Dexa scan and appointment with hospital consultant. Once I saw him, I had my endescopy done four and a half weeks later. I guess it's the infamous postcode lottery at work! Hope things get better for you.

[KatieTattie]

Yes navigator, I'm sure you're right regarding postcode lottery! I just don't know where to go from here, just been left high n dry1 no support from anyone in the nhs. As far as they're concerned the case is closed for me. I can't believe that all my out of range or borderline thyroid, adrenal, antinuclear, IgA, ferritin, estrogen, pituitary, prolactin, LH means NOTHING to medical professionals! I am really starting to think I am nuts! I have a young baby to look after and just feel completely let down and insulted by them. I have already spent all my savings to try to find out answers. Surely I should feel great if all these tests are supposed to be normal, I mean ehats the point of reference ranges if they're going to be ignored because they are 'just' out of range!

Can anyone give me any words of advice or should I just admit myself to a psych ward now! I need to know what is wrong because I need to be a good mum to my 6 month old! Sorry for being dramatic! x

[navigator]

You're not being dramatic at all, Katie. You are struggling with ill-health and a six month old and getting nowhere with medical profession. No - you don't need to book yourself into a psych ward - don't ever doubt that all your pain is real. There are people on this forum much more knowledgable than I am, not only about coeliac but also about other possible reasons for your symptons. What I would say is that your symptons could be coeliac. Although I had problems with stomach with bowels it was the debillitating fatigue which was the worse.

Is anybody able to give you support? I thinking not only in terms of dealing with NHS but also help with your baby and just able to give you a hug,tell you you're doing a great job in very difficult circumstances and acknowledge your very real symptons.

I wish that I could be of more help. Thinking of you.