It Has To Be Celiac.

[Twinklestars]

Hello, I'm new to this forum I found you all while I was researching the symptoms I've been having. And I have to say, wow! What you all have to say is ringing so many bells for me. I haven't had any testing done yet, but after reading on here I'll be making an appointment tomorrow. Even though I'm sure it's all old news, I'll list my symptoms and I'd be interested to hear your thoughts and whether you think I might be on the right track. Sorry, this will be long

- intolerance to dairy, colic and excema as a baby. Asthma diagnosed at age 2.

- vivid, recurrent nightmares as a child and a total lack of coordination. Also terrible mouth ulcers. Bouts of strong nausea, sometimes several times a day. I thought I was dying of cancer

- terrible gas pains and bloating combined with anaemia as a teen. Nightmares continued as did the nausea.

- Gas pain, bloating, mouth ulcers, nausea and nightmares continued into my teens and late 20's.

Just after the breakdown of my marriage in addition to the above I also had :

- the appearance of a strange blister type rash on my feet and legs on both sides. Insanely itchy and very sore after the blisters popped. They appeared in clusters and 4 years later I can still faintly see the scars.

- extreme fatigue

- on and off bouts of vomiting and D. This happens randomly and sometimes I have C. It seems to be one or the other these days.

- aching bones and joints. It's like the ache is inside my bones and is totally debilitating. I usually feel cold when it happens too.

In the last week I've had a couple of episodes of my throat and tongue feeling swollen. It's really scary, and my neck also felt really itchy. I saw a doctor (not mine) and was told it's angio edema and to take an antihistamine for a couple of days.

I've eliminated wheat from my diet because the only thing I'd had when my throat suddenly felt swollen was toast. So I 'tested' it and ate toast the next morning and it happened again. My throat also felt like it was burning. But I've only been off wheat for 2 days.

In the past I've been diagnosed with: chronic unexplained anaemia, IBS, possible arthritis, seasonal allergies and dermatitis.

I'm sitting here with the aching bones, joints and fatigue today and I feel like my body is broken. It's how my husband describes me (I remarried). He's really getting concerned about my health.

I also suffer from mild depression, anxiety and feel as though I walk around in a daze sometimes. I also sometimes mix up my words and don't sound them properly, which is really annoying because I've always been so articulate.

So, if you got through all that then you're a champion I should be asking for blood tests, yes? Should I push for an endoscopy even if my blood results are negative?

I feel a bit lost right now.

[gluten free overseas]

If you want to do blood tests, don't stop eating gluten foods until you've had the blood test.

Wow, it sure sounds like you have celiac disease. What terrible suffering you've had! Usually it is triggered by stress or an infection--so going through a divorce would definitely set you off.

I hope you get some answers! Going up to the search engine on this forum to look for cookbooks, recipes, medical books etc. helped me a lot. A lot of wonderful people have posted information here that is so helpful.

[Twinklestars]

Thankyou for your reply I've read I need to stay on gluten to be tested, but after my throat swelling I'm a bit scared to keep eating it. I'll talk it over with my GP and see what he thinks. If I need to go back on gluten I will, but carefully. Hopefully I won't need to go back on it for too long, I've only been avoiding it for a couple of days and there's a good chance I will get an appointment tomorrow.

The really odd thing is that having all those symptoms feels normal for me. Awful, but normal. Sad, hey? I'd love to know what it feels like to be healthy all the time, not just for pockets of time here and there.

[ravenwoodglass]

You do sound like you are in the right place. Hopefully they will give you a lab slip so you can get blood drawn tommorrow. If your doctor can't get you in tommorrow ask to speak to a nurse and see if they will let you pick up the slip. Explain that you know you have to get tested before you start the diet but that you are having the throat swelling feeling. Some of us do have an allergic reaction to wheat so an antihistamine might help with that. Ask the nurse if she thinks it might help to take one before you eat. You could try making a nice soup loaded with barley to keep your gluten levels up.

Edited to add that I agree with the others that you should not consume wheat until after you have talked to your doctor or a nurse. I didn't really make that clear before.

[pricklypear1971]

Don't eat wheat. Seriously.

I don't know if you're celiac (sure sounds like you have an issue with wheat) but I can tell you if you are experiencing angioedema or possible anaphylaxis you shouldn't touch it with a 10 ft. pole.

Any sane doctor will tell you that. If you want celiac bloodwork yes it must be done now; however it is not the end-all. There are other ways to diagnose it. If you die from eating it what's the point in a dx???

I was having weird anaphylactic reactions to food after I came off corticosteroids. My doctor told me not to eat them. It passed and cleared up but hose foods were very dangerous to me at that time,

Get to a doctor asap. ER if you have an anaphylactic reaction or edema.

There are other ways to diagnose you.

[domesticactivist]

Don't eat more wheat!!! That swelling could be the precursor to a fatal reaction!

But do go get celiac testing ASAP if at all possible. Make sure you get a full panel done, and schedule that biopsy for as soon as possible, too. There are lot of reasons for possible false negatives, and lots of threads about it on the forum.

I have a post on totally removing gluten from your home on the blog linked from my profile. You may wantto get someone else to do it for you just in case flour flying about could cause another reaction like the one you had. The best diagnostic tool is going to be getting rid of your exposure completely and seeing an improvement. (though healing does take time) I think your chances are good that it is celiac.

[Twinklestars]

I'm not touching wheat at all! My reaction, while not severe, was still frightening. I'm calling my GP as soon as they open this morning (I'm in Australia). I can guarantee he won't send me off for labs or anything unless he's seen me.

I didn't think of loading up on gluten with barley or other sources, thanks I have no idea to be honest if I've been consuming gluten then, my first thought was avoiding wheat. Maybe that's why I'm not feeling better even though I'm wheat free? I had bad stomach aches last night.

Thanks everyone for your replies and advice. It helps a lot. I've seen people think 'hypochondria' for most of my life when I mention just some of my symptoms, let alone list nearly all of them. It's nice to find a place where no one thinks I'm crazy.

I did forget to add in cavities, dizziness, severe 'growing pains' in my legs as a child (to the point I'd be sobbing every night for weeks) and unexplained vomiting (where I didn't have a virus or anything) to my symptoms. *sigh*

I'd also like to say this - Much love to everyone in the US on such a sad day today. You're in the thoughts of people all over the world xxx

[ravenwoodglass]

I'd also like to say this - Much love to everyone in the US on such a sad day today. You're in the thoughts of people all over the world xxx

Thank you.

[pain*in*my*gut]

I'm not touching wheat at all! My reaction, while not severe, was still frightening. I'm calling my GP as soon as they open this morning (I'm in Australia). I can guarantee he won't send me off for labs or anything unless he's seen me.

I didn't think of loading up on gluten with barley or other sources, thanks I have no idea to be honest if I've been consuming gluten then, my first thought was avoiding wheat. Maybe that's why I'm not feeling better even though I'm wheat free? I had bad stomach aches last night.

Thanks everyone for your replies and advice. It helps a lot. I've seen people think 'hypochondria' for most of my life when I mention just some of my symptoms, let alone list nearly all of them. It's nice to find a place where no one thinks I'm crazy.

I did forget to add in cavities, dizziness, severe 'growing pains' in my legs as a child (to the point I'd be sobbing every night for weeks) and unexplained vomiting (where I didn't have a virus or anything) to my symptoms. *sigh*

I'd also like to say this - Much love to everyone in the US on such a sad day today. You're in the thoughts of people all over the world xxx

Just wanted to say I am so sorry you have been suffering. You have been given great advise (the folks on this forum are awesome)!

Hope you get some answers quickly!! Good for you for being proactive and getting an appointment ASAP! You need those blood tests so you can stop the gluten entirely. With your symptoms, I wouldn't wait for a biopsy to confirm the bloodwork, even if it's negative. Your body will tell you the answer!

[Twinklestars]

*huge hug* Ravenwoodglass. It was a life changing day.

I have an appointment with my GP for this afternoon. I imagine he'll send me straight over for blood testing. Then it will be a waiting game for results

I will raise the possibility of getting an endo done regardless of my blood test results though. I'd really like to know definitely. Even though I read about lots of negative test results on here.

At the end of the day, I'll be trialling a gluten free diet and see how it works for me. As many others have said before me "I'm sick and tired of being sick and tired". I have seen that written LOTS of times so far on here!

And D has returned today Blergh, my stomach feels so sick!

[domesticactivist]

Yes! Do see if you can schedule the endo regardless. That way you can start the gluten-free diet ASAP!

[Twinklestars]

I'm back from my doctor's appointment I wrote out a big list of all my symptoms, then we discussed the ones that worry me most and discussed the throat swelling. He advised blood tests for pretty much everything gastro/bowel related including a full celiac panel.

I have an appointment with him again in 2 weeks to discuss my results and he will then refer me to a Gastroenterologist (GI specialist).

He said given my throat swelling episode (which he feels is more autoimmune than allergy given my other symptoms) he wants me to stay off gluten for the next couple of weeks and see how I feel.

If the GI doctor wants me back on gluten then we'll worry about it then. He said it's obviously not good for me and given the severity of some of my symptoms he'd prefer to lean towards a diagnosis by gluten challenge/diet than have me on it for weeks for a biopsy.

But, if the GI doctor wants to do a biopsy then obviously I'll have to go back on gluten.

I also found out that I've lost 8 kg (17 pounds) in the last 5 weeks I thought I'd been GAINING weight because my tummy was fat. No, I found out it's just bloated

[pain*in*my*gut]

I'm back from my doctor's appointment I wrote out a big list of all my symptoms, then we discussed the ones that worry me most and discussed the throat swelling. He advised blood tests for pretty much everything gastro/bowel related including a full celiac panel.

I have an appointment with him again in 2 weeks to discuss my results and he will then refer me to a Gastroenterologist (GI specialist).

He said given my throat swelling episode (which he feels is more autoimmune than allergy given my other symptoms) he wants me to stay off gluten for the next couple of weeks and see how I feel.

If the GI doctor wants me back on gluten then we'll worry about it then. He said it's obviously not good for me and given the severity of some of my symptoms he'd prefer to lean towards a diagnosis by gluten challenge/diet than have me on it for weeks for a biopsy.

But, if the GI doctor wants to do a biopsy then obviously I'll have to go back on gluten.

I also found out that I've lost 8 kg (17 pounds) in the last 5 weeks I thought I'd been GAINING weight because my tummy was fat. No, I found out it's just bloated

Wow, that is a huge weight loss! So glad you were able to get the labs drawn and a plan put together to get to the bottom of this. I agree....stop the gluten now and worry about a challenge later (if needed).

Keep us posted on the results! Good luck!

[Twinklestars]

It was so good to sit down with a doctor, present all my symptoms and he took me seriously. I have taken a list of symptoms in once before to my old doctor and she smiled and told me it was a virus. Actually, when I think back, EVERY doctor I've seen has told me I have a virus. "Oh, it's probably a viral thing".

My lovely GP didn't even mention the word 'virus'.

I feel like I've finally turned the corner to a better life.

Now I'm off to search for gluten detox because I still feel quite unwell this morning.

[glutentheintolerant]

Hey Twinklestars,

Just wanted to hop in after you told me you also posted your story here.

Must say this sounds very familiar:

I also suffer from mild depression, anxiety and feel as though I walk around in a daze sometimes. I also sometimes mix up my words and don't sound them properly, which is really annoying because I've always been so articulate.

Although I still occasionally mix up words (I think I'm simply socially inept, hah) I can fully subscribe to the walking around in a daze. To me it was as if though the world moved faster than I could keep up with.

One of my little tests to see if I've had any gluten is to move my eyes from left to right while keeping my head fixed forward. If my eyes seem to be 'heavier' and 'slower' than usual, I'm going to have to be careful and find out if I'm also depressed and then deal with that as I could have possibly been contaminated by gluten-containing foods when that happens.

I'm guessing it's a form of tiredness that we're both having. It just feels so weird because our minds know we shouldn't be tired?

Your weightloss is rather concerning. Are you on a gluten-free diet now? You might want to do daily weight measuring you could try keeping a diary on what you've eaten that day and then write the results of a specific foodstuff right next to it to get a better picture of what foods work for you and which ones don't.

[Twinklestars]

Hello GTI Yes, I'm on a gluten free diet now. It's been 4 days so far. I'm not feeling any better yet, but I'm hoping it improves.

The tiredness/fog is really weird, isn't it? Sometimes I'll be talking in a group of people and by the time I think about what I'm going to say everyone has moved on and the conversation is about something different. So frustrating! And completely unusual for me.

I actually don't own any scales, so I think I'll have to buy some to keep an eye on my weight. A food diary is a good idea, thanks. I'll do that

[glutentheintolerant]

I think that might be down to that chocolade bar you've been eating (as mentioned in your other thread). Go without it for a while and see the gluten-free diet improves your constitution.

Do keep an eye out on your weight. My GP warned me that if my weight was dropping, I'd have to contact him immediately so he could refer me to a dietitian.

[Twinklestars]

Well I get my test results back in 5 days. I'm so glad. I just wanted to add another symptom to my growing list so I can refer to this thread when I need to.

This morning I had a BM (floating as usual) and for the first time I noticed some oily residue floating on top of the water in the toilet. It was clear but had white streaks and specks in it. I have no idea whether I've had it before, certainly not that I've noticed. And this was very obvious. And my stool smelled really bad.

I can't wait for my results! Some answers would be nice.

[Twinklestars]

Arrgh!! I am so cranky!

I have my doctor's appt this morning to get my test results. I've been waiting for this appointment for 2 weeks. But I couldn't remember exactly what time to go in. So I rang them. THERE IS NO APPOINTMENT BOOKED!

The receptionist mustn't have put it in the computer. And to make things even better (total sarcasm) my doctor is now on holidays for 3 weeks.

So they managed to get me an appointment with someone else to get my results. So it's good I still get them. But she doesn't know the long conversation I had with my GP, so now I'll have to go through it all again.

I am so, so tired of this. Tired of explaining all the time how I feel and sounding like a total lunatic. The appointment might go great, and I hope it does, but right now I'm just so damn weary.

Will update when I get back.

[kareng]

See if you can get copies. I don't know how it works over there. You can say your American friend has a Celiac expert to email to. Or something. Or even you might be moving,.....

You can send them to the Celiac Center at the University of Chicago Med center but they want to email with the patient. Tell them that if they resist giving copies.

[Twinklestars]

Thanks for the reminder I will definitely ask for copies. I see no reason why they wouldn't give them to me.

And I think I glutened myself on the weekend again. What is it with me and weekends?? We went out for ice-cream to a place that told us all their ice cream except for Cookies and Cream were gluten free. They actually know what gluten free means! I've eaten there a couple of times now and had no problems, but I had liquorice flavoured ice cream yesterday and I got that burning sharp pain in my chest after eating it! Now today I have typical symptoms and just feel awful.

I love how I feel when I'm off gluten, it makes it so obvious it isn't good for me.

[pain*in*my*gut]

I've eaten there a couple of times now and had no problems, but I had liquorice flavoured ice cream yesterday and I got that burning sharp pain in my chest after eating it! Now today I have typical symptoms and just feel awful.

Hi Twinkle! Licorice has gluten in it, so yes, you got gluttened!

Keep us posted on your blood results (even though I think you have your answer about needing to be gluten free).....

[Twinklestars]

Okay, I'm back from the doctor. My results for celiac are:

Endomysial antibody: negative.

Tissue Transglutaminase IgA: 6 units (< 20)

Total Serum IgA: 1.58g/L (0.69 - 3.10)

So according to this, no I don't have celiac.

But they also ran a test for IgE (serum) which was: 75kU/L (< 26).

So, she told me I have IBS and has referred me to an Immunologist to get an allergy screening done.

I feel kind of deflated.

[beebs]

Okay, I'm back from the doctor. My results for celiac are:

Endomysial antibody: negative.

Tissue Transglutaminase IgA: 6 units (< 20)

Total Serum IgA: 1.58g/L (0.69 - 3.10)

So according to this, no I don't have celiac.

But they also ran a test for IgE (serum) which was: 75kU/L (< 26).

So, she told me I have IBS and has referred me to an Immunologist to get an allergy screening done.

I feel kind of deflated.

Those tests have a notorious false negative rate. Seriously - you should be having a a biopsy with your symptoms regardless of what the test says.

IBS is a non diagnosis - its like a "we have no idea, so we'll call it IBS type thing"

You should ask to be referred to a GI. Ring the coeliac society in your state and ask who they recommend in your area.

[Twinklestars]

Thanks. I had a good cry and feel a bit better. I really didn't want to her the letters IBS come out of her mouth. My doctor was going to refer me to a GI regardless of my results, but she said according to my test results there is no medical reason to send me to a GI.

So I'm seeing an allergist

I might wait until my GP gets back from holidays then go back to see him. I rang the Coeliac society here and they said they aren't allowed to recommend doctors. *sigh*