Could celiac really be making me feel this bad?

[kam00096]

Hi. I've posted before about this but I keep getting worse and more stressed. I'm so confused and don't know what to do next. I've had two blood tests come back positive for celiac but will have an 18 week wait for an appointment with a gastroenterologist and another wait after that for an endoscopy. I had decided not to give up gluten until after that because I'm phobic about vomiting and everyone's telling me I'll be so much more ill if I cut it out just now then have to do a gluten challenge. 

Trouble is I'm really ill at the moment and I'm not sure how much longer I can cope with it. I'm also not convinced that celiac can be the cause of all of my neurological symptoms and am still pretty terrified that I have ms or some other illness. I've seen a neurologist and ENT in the past but they just dismissed me and I can't get tested for anything else because the doctor thinks it's all in my head, so no mri. 

My symptoms are... nausea and problems with swallowing plus severe IBS  (for over 10 years), bloating etc, reflux, dizziness/ boatiness (for last 3 years), fatigue, weakness, legs feel like jelly, off balance, muscle pain and twitches, pins and needles, night sweats, night terrors, waking up with full body tremors, blurred vision, extremely poor night vision, essential tremor, hair loss... 

My B12, ferritin, blood sugar and thyroid tests all came back fine. The docs have just run a micronutrient panel but are saying it will take weeks or months for the results to come back and they don't expect anything to be wrong with them anyways. 

I don't know what to do but I've wasted the last 13 years of my life being ill and I'm at the end of my tether. 

[Irene Joanne]

Any chance you can be put on a cancelation list at the doctors? Sometimes it does help to call and explain your situation and maybe they can fit you in sooner. Other than that I don't know what to advise because I was n a similar situation and I'm  not sure if I would have waited that long. I'm just grateful that I got in to see the specialist within a couple months and his sweet booking nurse fit me in for a biopsy two weeks later. Can you cut back on gluten for now? I just learned that you only need to eat gluten for two weeks prior to a biopsy- so not as bad as the 3 months for the blood tests.

just before diagnose I had decided if I had to wait months for the biopsy- I wouldn't risk my health by continuing to eat gluten. But I'm new to celiac and there are much more experienced people on here that hopefully will offer you better support.

 

[cristiana]

Hi Kam - I have just read your older post, too, and see you are in the UK?  Am I right?

I'm in the UK and I am only too well aware that the wheels role slowly in the NHS for these follow up appointments with a gastroenteroligst and then on top of that, the actual biopsy.    I see from your previous posts that going private is not an option - I think my friend went private and it cost about £800 for the biopsy and the consultations but that was a couple of years ago.  However, if you could get the money together I imagine you could get all this testing behind you within the month?  

You may want to give the Coeliac UK helpline a ring and see if they can give any particular advice regarding the long wait you have ahead of you and your awful symptoms to see if there are any other options available to you within the NHS system.

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Everyone's symptoms are different but if you were to search the site with all your symptoms I think you will see that there are examples of people who have had similar experiences - indeed some people have been very poorly - and gluten was found to be the culprit after all.     From your list I have experienced the following symptoms

IBS, bloating etc,  fatigue, weakness, off balance, muscle pain, twitches, night sweats, extremely poor night vision, hair loss... 

plus internal itching, hip pain, temporary visual disturbances on waking (hypnopompic hallucinations), migraines of all varieties ... and I am sure I could list more.  Oh yes - and terrible anxiety before going gluten free from which I have occasional setbacks, but I'm winning. 

Some have been to do with gluten I am quite sure.  Others I am not so sure about - the latest one has been the sensation of my skin being pricked when I go from hot to cold rooms.  Although I am strict about being gluten free I have just realised that some of the yummy Easter eggs I have been scoffing 'may have traces of wheat'....   I stopped the chocolates and the prickling has gone!

It does sound as if you are on the right road to finding out what is wrong.  

Keep us posted.

 

 

 

[cristiana]

A couple of other things I forgot to say. 

The physical manifestations of coeliac disease are very real but if my own experience is anything to go by anxiety just makes everything a whole lot worse - too much adrenaline does a lot of strange things to us.  If you are feeling very anxious try to see what steps you can take to alleviate anxiety.  There are many helpful posts on the subject on this website.

I harp on about it quite a lot in my posts on anxiety and depression but I found the principles outlined in the following books so helpful whilst I was waiting for my DX.  You might like to take a quick look, even without buying them there are some helpful tips on line.

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The 'six steps' are to do with:

- physical exercise 
- omega-3 fatty acids
- natural sunlight exposure 
- restorative sleep
- social connectedness
- meaningful, engaging activity
 

Although the book is to do with depression I found it helped with my anxiety, too.   Or, more specifically to do with anxiety:

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Also, I notice you say you are worried you have MS or some other illness.   A whole lot of us on this website have found ourselves in this situation and it really did turn out to be coeliac disease all along.   My nutritionalist calls it 'the great mimicker'.   

All the very best.

 

 

[Palvyre]

That can all be Celiac related. I would also ask for a Lyme disease test. 

[kam00096]

Thanks very much for all of the replies. They're really helpful! I am in the uk and unfortunately there's no way to get the scope and biopsy done quicker - I just can't justify taking on the debt to have it done privately, particularly not as my job isn't too secure at the moment because of my attendance (it's a nasty vicious cycle). And my doctor told me there's no way to speed up the process "unless it's cancer, so there's no point in making a fuss about it" which I understand but don't find particularly helpful. I think I am just going to go gluten free at the moment and see how I get on. 

Something else I've noticed recently (and a few times over the past few years) is that I seem to get a lot of symptoms of hypo/ hyperglycemia too. My blood sugar has always been fine but I've had an awful sweet taste in my mouth again recently, which I haven't read anywhere is a celiac thing...

 

[Irene Joanne]

1 hour ago, kam00096 said:

Thanks very much for all of the replies. They're really helpful! I am in the uk and unfortunately there's no way to get the scope and biopsy done quicker - I just can't justify taking on the debt to have it done privately, particularly not as my job isn't too secure at the moment because of my attendance (it's a nasty vicious cycle). And my doctor told me there's no way to speed up the process "unless it's cancer, so there's no point in making a fuss about it" which I understand but don't find particularly helpful. I think I am just going to go gluten free at the moment and see how I get on. 

Something else I've noticed recently (and a few times over the past few years) is that I seem to get a lot of symptoms of hypo/ hyperglycemia too. My blood sugar has always been fine but I've had an awful sweet taste in my mouth again recently, which I haven't read anywhere is a celiac thing...

 

Good for you for doing your research and making the best decision you can in your circumstances. Keeping your job is important too- hopefully going gluten free now will make a big difference in how you feel. Get well!

[Posterboy]

Kam00096,

I think everybody on this board feels your pain.  18 weeks seems like a long time but we all have to do what is best for ourselves.

Try searching on this site for blood serology results they can be very helpful.

https://www.celiac.com/articles/13/1/What-is-the-probability-of-false-positive-and-false-negative-results-from-the-serological-tests/Page1.html

I have included one I found in a quick 5 minutes search.  Obviously it deserves more time than that.

But positive serology was enough for me.  Serology is often 90+ percent indicative and you have had two positive's already.

I was feeling at my worst and had no doubt gluten was the cause and have gotten better everyday since.

No one can decide but you what is best for you we can only offer advice and share our stories.

A compromise that might work in this case is a low carb diet.  It should help bloating from poorly digested carbs in the diet.  Also low carb does not mean gluten free. 

You should still have enough gluten in a low carb diet to trigger poor compliance.

Most gluten antibodies go down in that time so I wouldn't go completely gluten free for sure but less gluten is always a good thing if you think (know positive blood test) is a problem for you and you have decided to hold out for the biopsy.

You might try spelt.  This article covers why spelt my be a good low gluten alternative.

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I hope this is helpful and good luck on your journey.

For the fatigue and energy issues ***** this is not medical advice but I have said this elsewhere on this board 100% Magnesium CITRATE is amazing for chronic fatigue since I began taking it 200mg 3/daily with each meal I have not had fatigue issues since.  At one time I even took 3/day plus 1 hour before bedtime for restful dreams but do not need it that often anymore.

It will be harder to find the CITRATE form but your body will thank you for it with much higher energy levels.

And yes gluten can cause all these symptom's you mention and why they call it the "iceberg" disease/diagnosis because up to 20 other disease are associated some strongly some only occurring with a diagnosis.

Posterboy,

 

 

[joan b]

i am having another attack of anxiety due to accidently eating gluten but saying that im begining to think im lactose intolerant  i am shaking cant relax cant sleep x i am on citalopram thought this would help with the anxiety

 

 

[cristiana]

Hi again.  Kam - it seems that six weeks is the recommended length of a gluten trial in the UK if you need to reintroduce it and I am fairly sure my own doctor said at least two slices of normal toast every day would be adequate - but you might want to check that.

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I took it upon myself to eat everything I could that I knew would be forbidden once I was gluten free so ate Weetabix, Twix Bars, Penguins.... It brought back a tight headache across the temples that I hadn't had since I was at school. I can almost feel that headache again just thinking about that gluten trial!

I sometimes have the sweet taste but it has been down to new toothpaste or artificial sweeteners in drink.   I get very shaky sometimes if I am not eating regular meals..  If you are concerned the blood test for diabetes is very easy.  Have you had a test before?

Joan b - I was put onto citalopram when I was undiagnosed.  It was a very small dose so I am still not sure whether it helped or not although I think it probably took the edge off things.  I felt worse for a few days when I first took it which apparently is a common side-effect.  It is worth remembering this - things should get better soon.  In my own case I found it was definitely worth looking at other life-style factors such as getting enough exercise, sunshine, omega 3 etc in the meantime.