Need Help / Advice - Think I'm Celiac

[Shadowmaru]

Hi all, I think this all started about 8 years ago and has gone undiagnosed since then as IBS.

 

For about 8 years, I have had constant chronic headaches, every day of my life, it's been hard but i'm used to them now, and always bowel issues. Well this year I have had a lot more problems; Headaches are worse Stomach ache Lots of acid/indigestion Extreme fatigue Constipation & Loose stools Burping & out of the other end frequently (sorry) Bloated feeling (kind of alien shape belly) Vomiting after eating Stool covered in mucus And a few more...

 

I didn't know about Celiac disease until I had my recent blood test after complaining to my Dr. I asked the nurse what he ahs checking for and she said Celiac disease, so I have come to this forum after looking on Google to see what it is all about. I beleive it's an auto-immune disorder? And having this condition can increase your risk of other auto-immune diseases? the only reason I ask is because I suffer from Pericarditis, for the last 3 years, which is an auto-immune disease, so I am wondering if there is a connection in terms of Celiac disease and this? Not sure.

 

I have always wondered why I vomit after drinking beer too, which made me stop a long time ago. I can't even have a pint without feeling really sick or actually vomiting, so I never touched it since, in about 8 years.

 

I went to a Golf day yesterday, the meal came and it was a carvery, bloody lovely too, it contained: Chicken, Gammon & Beef, with potatos, yorkshire puddings, and a load of Gravy. Well, about 30 minutes to an hour passed, and my stomach was absolutely killing. I didnt sleep a wink last night, I was dehydrated, my head was banging, and I had acid in my throat, and needed to be sick or go to the toilet. This lasted all night, and i'm in work now, had to use the toilet this morning, it wasn't pleasant, I still feel really sick, tired & weak at the moment, it's a horrible feeling.

 

I have sandwiches next to me (bread) and other food which contains gluten, but i'm really not sure I should eat them just in case. I'm sorry this is long, but i'm at a xroads right now and don't really know what to do because I dont know much about the disease, i'm just in a lot of pain. So... After all that, my question is, does it seem like I could be Celiac, or something else? Thanks, Shadow.

[Shadowmaru]

Well I got my blood tests back, I don't know if anyone can understand these but the nurse told me I need further bloods in a month due to my "Serum ALT" showing as 71 when it should be 30-35... No idea what this means.

 

There was also no proper Gluten tests done either, it's just your normal routine one with a couple more thrown in... Although my Serum Urea level is high and all my Haemoglobin levels are higher than normal. I dont know if this is related.

[Cara in Boston]

You need to get the proper tests done - there is a whole panel of blood tests needed.  Make sure you doctor doesn't skip any.  Also, you need to be eating a regular diet until the testing process is over.  It took several months for my son and several weeks for me.  Do not go gluten free until you are done with testing.

 

While you are waiting, find out if your family has a history of autoimmune disorders (they all seem to be related) and if others have issues like IBS or the like.  (many are misdiagnosed and are really gluten intolerant).  Take some time to figure out recipes and meals that you will like when you finally are able to go gluten free.

 

When testing is done, even if it is negative, try eating gluten free for three months.  The tests are not 100% accurate and even if you do not have celiac, you could still be gluten intolerant.  If your symptoms improve, you will have your answer.

[Shadowmaru]

Thank you for the reply.

 

My sister was diagnosed with IBS, and my mother, and I was as well, so there is a connection there.

 

I have eaten some gluten foods this morning, and now my stomach is twisting, but not so bad, maybe it will affect me more later.

 

Although I feel like I could fall asleep at any moment, but this maybe due to severe insomnia last night, which I believe is a symptom of Celiac Disease ?

[kenlove]

glad you found it posted!

good luck!

 

Thank you for the reply.

 

My sister was diagnosed with IBS, and my mother, and I was as well, so there is a connection there.

 

I have eaten some gluten foods this morning, and now my stomach is twisting, but not so bad, maybe it will affect me more later.

 

Although I feel like I could fall asleep at any moment, but this maybe due to severe insomnia last night, which I believe is a symptom of Celiac Disease ?

[Shadowmaru]

Thanks Kenlove.

 

I'm now having hot flushes and feel quite sick, burping a lot, and a little bit of acid/sick in my throat.

 

I am hoping it's Celiac so I can at least do something about it.

 

Having a chronic headache for 8 years has been no fun,

[kenlove]

I only hope you can  turn this around quickly, I was glutened by accident this week for the first time in years.   Had forgot how miserable it is. Good luck

 

Thanks Kenlove.

 

I'm now having hot flushes and feel quite sick, burping a lot, and a little bit of acid/sick in my throat.

 

I am hoping it's Celiac so I can at least do something about it.

 

Having a chronic headache for 8 years has been no fun,

[Shadowmaru]

Ah damn, that must have felt quite horrible..

 

Just out of interest, what was your symptoms / how long until they came on etc?

[cyclinglady]

Welcome!

Here is a link to the University of Chicago's celiac website. It contains the list of blood tests and discusses the 300 or so known symptoms of celiac disease:

Open Original Shared Link

Keep eating gluten until all testing has been completed! Take care.

[kenlove]

with me its been pretty fast -- sometimes befoer I leave hte restaurant  -- not a pretty site.  lasts  about  3 days

 -- i hope you dont have to go through that  but afriad  every celiac does at some point.

good luck

Ah damn, that must have felt quite horrible..

 

Just out of interest, what was your symptoms / how long until they came on etc?

[Shadowmaru]

I have been eating as normal, to make sure I don't mess the test up, but it's hard. I'm also keeping a diary of what I eat and the symptoms...

 

But I am suffering for it right now. I ate before some things on a Pitta Bread.

 

30 minutes or less later:

 

Stomach Cramp, Dizzyness, Hot Flashes, Fatigue (Nearly fell asleep), Headache, Brain Fog, Bloating and then followed by Loose Stools, most stopped after 2 hours, except for the headache and stomach cramps.

 

The hot flashes are so strong though, it literally feels like lava coming from my chest to the top of my head, it's quite bizzare.

 

Stomach ache/cramps is still there though, I have had that all day.

 

So I have a month of this at least until we do more bloods.

 

Damn :-(

 

edit to add: I have just read as well, if diagnosed over the age of 20, you have a 36% chance of developing other auto-immune disorders... This for me would be my other two conditions:

 

Geographical Tongue

Pericarditis

 

Life's good!

[ravenwoodglass]

Call your doctor's office and ask if you can pick up a script or have them call in the order for the full celiac panel. Ask to speak to a nurse and read her off the tests you need done. Tell her also how bad you are feeling and about the new or worsening symptoms. Tell them how badly it is impacting your ability to work. If you can get a short term medical leave you might want to consider it. 

You do sound like you could be one of us and hopefully you can get in sooner than a month to have the blood work done. 

While you are suffering though the wait do be sure to read as much as you can and ask any questions you need to. Oh and feel free to vent if needed. 

I hope you get answers soon and start feeling better.

 

PS  I have never had another migraine since about a week gluten free (unless I get glutened) Hope the same goes for you. 

[Seeking2012]

I have been eating as normal, to make sure I don't mess the test up, but it's hard. I'm also keeping a diary of what I eat and the symptoms...

 

But I am suffering for it right now. I ate before some things on a Pitta Bread.

 

30 minutes or less later:

 

Stomach Cramp, Dizzyness, Hot Flashes, Fatigue (Nearly fell asleep), Headache, Brain Fog, Bloating and then followed by Loose Stools, most stopped after 2 hours, except for the headache and stomach cramps.

 

The hot flashes are so strong though, it literally feels like lava coming from my chest to the top of my head, it's quite bizzare.

 

Stomach ache/cramps is still there though, I have had that all day.

 

So I have a month of this at least until we do more bloods.

 

You need to have these tests done:

 

Endomysial Antibody

Tissue Transglutaminase Antibody (tTG)

Immunoglobulin A

 

I recommend that you print that out and take it to your nurse/doctor/whoever and tell them that is what you want done. If they refuse or hem-haw around as they already have done, get another doctor. Those are the tests you need to answer your question of whether or not you have Celiac, and I think you do have it. Let us know what happens.

[nvsmom]

The DGP IgA and DGP IgG are also great tests to get done.

[Shadowmaru]

Thanks guys, i'm going to call them tomorrow as I can't put up with this, it's terrible... I think i'd end up about 7 stone if I did this for a month !

 

Can I ask, what's the DGP igA and DGP igG test compared to them others as Seeking2012 said ?

 

Over the weekend I went to Tesco (UK supermarket) and down the isle, there was about 80 different variations of cereal, and only 1 box was Gluten Free...

 

Anyways, I ate it, and I was perfect! No stomach ache, headaches, vomiting etc, it was great !