In so much pain

[Lyndsey80]

Hi

im new here, I'm currently under a gastroenterologist being investigated for possible celiac disease. 

2 years ago I had my little girl via emergency section, since then my life has been torture. I suffered heavy bleeding, abdominal pain and tingling throughout entire body. Some time later after being checked out by gynaecology and given all clear in that area I started with ibs symptoms, vertigo, joint pains in hips, knees, shoulders. Heartburn, indigestion and migraines. My bowel habits are forever switching between constipation and diorreah and the abdominal pains can be unbearable sometimes, switching from upper to lower pains. I occasionally get sore scalp, bleeding gums and tonsil stones. So much going on and I feel like I'm so down and scared that it could be something very serious. The doctors sent me to cbt for anxiety which yes I do suffer from but only because I feel like I'm going through so much. I pushed for further tests as I was in so much pain. I had abdominal scan which was clear and I'm due an endoscopy at the end of January. Does this sound like celiac disease? I also have low iron count and elevated liver gtt levels. 

Please help ?

 

[GFinDC]

Hi Lyndsey,

Your symptoms could be from celiac disease.  You should ask your doctor for a full celiac disease antibody panel.  If the blood antibodies are positive, then they should do an endoscopy and take 4 to 6 biopsy samples for review.

These are the antibody tests:

Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and DGP IgG
Total Serum IgA

Your liver numbers and low iron can both be related to celiac disease.   Alternating C and D are also common celiac symptoms.  Pain, yep, that sounds right too.

You only need to eat a small amount of gluten to keep the immune reaction going for testing.  So you could cut back some on the gluten, and just eat 1 cracker a day, or 1/2 slice of bread per day.  Also, you can try cutting out dairy to see if that helps symptoms.  Pepto Bismol can help symptoms a bit too.  Plus plain old aspirin and peppermint tea for bloating.

Welcome to the forum Lyndsey!

[cristiana]

Hi Lyndsay

These are the following symptoms that I shared with you:

heavy bleeding, abdominal pain and tingling throughout entire body, ibs symptoms, vertigo, joint pains in hips, heartburn, indigestion and migraines, low iron count and elevated gamma globulins - in other words, elevated liver enzymes.

I also had two bad bouts of canker sores and used to get quite bad hallucinations on waking (hypnopompic hallucinations they are called - although 'normal' people also get them, apparently, at least a few times in their lives).  Throw anxiety into the mix - that just made things even worse.

I am so glad your doctor is testing you for celiac disease. It sounds a good place to start.  Have they put you on an iron supplement yet?  I was put on a very strong supplement even before diagnosis that gave me terrible diarrhea and bleeding.  They then put me onto ferrous glucanate, I took those tablets an hour before breakfast swallowed with water - so much gentler on the system.  The other thing I'd be inclined to find out is how your B12 levels are.  If they are low they can contribute towards anxiety and tingling.

A lot of horrid symptoms can be caused by celiac disease.

Let us know how you get on.

Hugs.

 

 

 

[Lyndsey80]

Hey thanks for the replies guys, really appreciate it. 

Im going to do as suggested and cut down the gluten and dairy but still eat enough gluten for testing purposes. 

I have been put on iron but now told to stop taking until after endoscopy biopsies. I can really tell my iron is low as I'm struggling with breathlessness and some days I get really strong palpitations. So scary I just wish I could get the answers so I can treat the problem. 

I'll keep you posted on my results. 

Christina those hallucinations must have been really scary ? 

Ps. My b12 levels are within normal range, I was tested for that a while ago to investigate the tingling. 

Iron supplement was ferrous sulphate 3 a day which gave me worse tummy ache and nausea. 

The Christmas over indulging had really taken its toll too ?  I have been doing a bit of researching into gluten and you really don't realise how much you are consuming until you do the research. It's in almost everything I generally eat! ? Bread, pasta, cereals are going to be sorely missed if gluten is my problem. 

Thanks again for replies xx

[cristiana]

I'd forgotten about the breathlessness and palpitations - you can add that to my list too!

Yes, the hallucinations were odd and I was scared until I read about them on the internet - I searched for answers there as my young foreign neurologist had never heard of them (could have been a language problem). I think it could be related to migraines - that's my conclusion, as my sister has both too (although she is not a celiac).

Whilst you are waiting for the endoscopy I'd try to eat some iron rich foods.  I found this but I'm sure there are other helpful sites. 

Open Original Shared Link

Also, make sure your B12 levels aren't just above borderline. Mine in the UK were so it rang no alarm bells with my GP  - but my nutritionalist said with my tingling I should be taking B12, so I started to take sublinguals which helped a lot. 

The  anxiety side of things is worth addressing. My mind raced ahead to all sorts of scary scenarios when I was ill but now when I read your list and my list again I think it is perfectly understandable to wonder what on earth is going on!  I found when I was very ill -  4 years ago - I used to feel a lot better if I could just spend time with a neighbour, or maybe helping an elderly person by giving them a lift in my car etc.  Just getting out lifted my mood.  I realise you must be rushed off your feet with your little one (maybe you have more than one child) but make sure you don't get isolated. 

At Last A Life is a great book by Paul David that helped with anxiety. There is a related website.  

I also found this book very helpful - although what I had was clinical anxiety, and let's face it, who wouldn't!, there are some tips in this book which really helped and still help if I find myself going down that road again.

Open Original Shared Link

x

 

 

 

 

[Ennis-TX]

I found taking a b-12 supplement for stress and energy helped, one by liquid health is great as you just add a tbsp or 2 to a glass of juice or tea and drink it. Magnesium was a huge thing for me also, I found a nice powdered one by doctors best that was easy on the stomach, this helped with my tingling, and muscle and joint issues it seems. Iron levels are a pain, I suffer from intestinal hemorrhaging to top of it all off. >.> the cravings for chocolate and other odd things are crazy. I found pea protein to be great for providing protein, iron, magnesium, etc, Been using Growing naturals for this, use it in shakes, bars, or just mix it into dish I am fixing like one would a flour for thickening.

I would suggest talking with a dietician about it all and getting tested for deficiencies in other vitamins and nutrients. Celiac disease damages the intestines and everyone is a tad different in what we end up having issues with.

[deb-rn]

My anxiety decreased after going gluten free 3 yrs ago and has almost disappeared as we gave up grains, potatoes and most other carbs recently.  Carbs trigger so many things!  I did a bunch of medical research on it the past couple months.  Sjogren's Disease can cause some of your symptoms too.  I was diagnosed with it years ago... when you have 1 autoimmune disease, you will usually have others lurking too.  After you are tested, no matter the results, try going gluten free.  My tests weren't conclusive, but I felt so much better off it, that I didn't need to be convinced with some expensive tests!  Husband came along for the ride and found out the cause of his 50+yrs of IBS!  After ditching the carbs, he lost a bunch of other symptoms!  Our food is killing  us.  We all need to get back to real, whole food.  So many of our diseases are caused by eating too much processed food.

Best of Luck!
Debbie

[Lyndsey80]

Hey everyone thankyou so much for all your help and advice. I'm so glad I found this site, it's comforting to know others have been here and that's it's not all due to anxiety as one dr suggested. 

Christina I do have 2 young children so I'm always out and about keeping busy, I do find my anxiety is at its worse in the evenings when the children are in bed. Oh and that's when I start to crave sugary foods and carbs (usually toast or cakes) which make me feel ill in the night. 

I will look into the iron rich food list and get some b12 vitamins. I've definitely decided no matter what the test results reveal I will be switching to gluten free and hoping for a dramatic improvement in time to my health. It would be great just to feel pain free again. 

Thanks again 

lyndsey 

[icelandgirl]

Hi Lyndsey  and (((((hugs)))))!

I can identify with a lot of your symptoms.  Mine got really bad after the birth of my daughter as well.  Right before diagnosis I was convinced I was dying.  I was in so much pain all the time, terrible vertigo and headaches daily, body aches, diarrhea all day.  It was awful.  Finally my doctor tested for celiac and there it was...the answer.  It has taken a while...I'm almost 3 years since diagnosis...but I am so much better than I was!

Do I think you could have celiac?  It certainly sounds like it could be.  I agree with GFinDC...if you haven't,  get that celiac panel done.  Perhaps your doctor could order that while you wait for your endoscopy.   For the endoscopy, make sure that they plan to take several samples to biopsy...very important!

Boiling ginger root in water makes a very soothing tea for me.  Peppermint tea is very nice as well.  A heating pad really helped my pain and an Epsom salt bath is very relaxing.   Hopefully some of those things help!

Keep advocating for yourself and push for complete testing...you deserve to feel good.  Welcome to the forum and please update us on your testing!

[Lyndsey80]

Hi icelandgirl, 

Thanks for getting in touch ??. 

I'm glad your feeling much better than 3 years ago and hope you continue to do so. I would never wish it on anyone but it's comforting to know that I'm not going crazy and others have/had the same symptoms and issues as myself. 

One question the celiac panel is this done by blood tests? I'm going to see my doctor this week as unfortunately I've had to take time off work this week as I'm having such a terrible flare up of abdominal pain, burning and general low mood so I need to see him about a sick note so I might as well enquire and request for the panel tests. When I saw the gastroenterologist he did take one lot of bloods but didn't actually discuss what this was I just went along with it as I'm so used to having so many bloods done recently. So maybe this was the tests, I'll ask. My endoscopy is 26 January so i'll ask about the biopsies before hand to make sure they are doing the full tests.  

The heating pad is a good idea, I often find myself in bed putting light pressure on my abdomen as it kind of relieves the pain a little.

It is definitely true that you have to advocate yourself, so many times I went to the dr and was so lost, down, upset and in so much pain yet time and time again they'd run same blood tests (full blood count, liver function, thyroid function, etc, etc) and come back with you are just short on iron and liver is elevated but your okay it's just anxiety or its your hormones after having a baby. They tried to give me anti depressants. Eventually I saw a different dr I sat down in his office and said I've had enough I'm not depressed, I'm sick. I need you to find out what it is so I can fix myself. He has been great so far so hoping I'll get some answers soon. All I ever wanted when I had children was to enjoy being a mum and be a good mum but I've been so poorly somedays that I have no patience or no energy to do fun things with the kids. It's not fair on them. 

Sorry for the long post ?

Thanks again for the advice and help 

Lyndsey x

 

[cyclinglady]

These are the celiac tests:

Open Original Shared Link

?

[icelandgirl]

Hi Lindsey!

Yes, the celiac panel is a set of blood tests...cyclinglady's link is great.  If you haven't already, call your gastro doc to see if these tests were ordered.  If they weren't, ask your GP to order them this week.  The results should be back before your biopsy and you will have more information to determinew what's going on.

Your new doc sounds great...any time a doctor really listens it's encouraging.  The pain and other issues that you are feeling are not just in your head.  Don't let anyone tell you that.  Only you know how your body feels!

Keep hanging in there and keep eating some gluten each day until your testing is complete...1-2 slices of bread or the equivalent should be sufficient.

I completely understand your concerns regarding your children.  I'm sure that you are a wonderful mum.  Hopefully soon you'll be feeling better enough physically to be able to enjoy the time with them.  Big ((((hugs))))

[deb-rn]

Today I ordered a TENS unit to treat the pain below my waist.  It's just getting terrible!  I'll let you all know how it goes!  I went to GYN hoping it was possibly something with the mesh... but he said no.  Sitting, standing, lying... it all hurts!  It wakes me up at night.  I can tell there is some spasming at times.  Maybe I'll increase my magnesium a bit too.  My foot was threatening to spasm last night too.

Debbie