Never Felt So Sickly, Please Help. :(

[Charlotteee89]

Hi there, I'm new & trying to figure out what's wrong with me.

 

Background - 24 year old female from the UK, have had anxiety/panic disorder for years but slowly I've got better.

 

Sorry, this is going to be long.

 

I'm not been feeling right for a few months now, over the autumn of last year I had so many viruses/colds, literally I'd get over one then another would come. Then in early-ish November I woke up feeling really icky, swollen glands, headache & feeling really nauseous & lightheaded but managed to get myself to work. Throughout my shift (I work in a supermarket, in the clothes department) I felt worse & worse - I couldn't stand straight, had horrible waves of nausea & dizziness & had hot flushes & chills. I basically collapsed behind the desk with what I can only describe as what felt like a severe panic attack (never had one that bad ever), I was blacking out, shaking etc. An ambulance was called but by the time they arrived I felt better, they said I just had a bad virus & told me to go to see my Doctor & get bloods done & my work place sent me home, I was off sick for 2 days. I saw a Nurse a week later (trying to get a Doctor's app is near enough impossible where I live) she wasn't overally concerned & just ticked the boxes on a blood test form (FBC, Thryoid, LFT), I had my blood test & heard nothing back. 

 

Fast-forward to 2 weeks ago. On a Wednesday I decided to get a taxi to work (can't drive yet) as the weather was awful & I didn't fancy getting a bus. However I basically was geared up for winter with all the layers I was wearing & as soon as I got into the taxi I felt awful, so hot & sweaty, nauseous, dizzy etc. His taxi was too hot. When I got to work I felt quite iffy for a few hours (I think I had mild heat exhaustion) but I felt a lot better by the end of my shift. I had also eaten a decent meal before I went to work, but cannot remember what I had.

The next day I felt fine, but when I get home I had a plate of pasta & after a few hours nausea & lightheaded-ness kicked in, my bowls were also rumbling like mad. The next day I had pasta again & yet again the nausea & lightheaded-ness kicked in, I went to work & kept having dizzy spells & hot flushes but it eased off a bit. I still felt poorly the next day & stupidly I again had pasta as it was an easy meal to sort out. I felt dreadful afterwards, so nauseous, dizzy & I had stomach cramps. On the Sunday I still felt awful, managed to have food - meat & veggies. By Monday it all eased off & did so for a week until yesterday...

 

I was out for the day with some friends so woke up early-ish, got ready then decided to have something to eat - a crumpet (a griddle cake made from flour, eaten mainly in the UK) & afterwards the nausea & lightheaded-ness I'd become accustomed to arrived. I thought I was just a little stressed, however my bowel movements were not normal at all (sorry for the TMI here) very small & floaty. As my friend arrived I had horrible stomach cramps but tried my best to ignore it. I felt a lot better a while later & we all went out for dinner (I had chicken & fries) then went to her stables & ate tea & biscuits. When I got home the nausea & lightheaded-ness arrived but arrived a lot more strongly, I felt so faint. I went to bed early but before bed I had half a pack of chips (crisps here in the UK) & a bowel of cereal because I thought I was just hungry. & I had a horrible time, I was shaking like mad in my bed, then sweating, then blacking out, I felt so nauseous & dizzy so I called the emergency services, the woman on the phone highly suggested I go to A&E but I decided not to, I fell to sleep & woke up today feeling very fragile.

 

So today I've been thinking what the hell is going on with me, trying to figure it all out. This week I've eaten a lot of not-so-healthy food which I know has been gluten high including the biscuits I ate at my friend's stables - full of gluten too so was the crumpet, chips & cereal I also ate.

 

Is it possible to have reactions to gluten not necessarily straight away? Last night was awful, I'm still traumatised with how ill I was, but all week I've felt fine. I'm also trying to think if it's mental - but the two times I wrote down here I don't remember at all feeling stressed before the nausea & lightheaded-ness came, & when I have had bad anxiety/panic attacks in the past they've never lasted that long with those symptoms & I could always talk myself out of them. It just seems so ironic that especially this time & the time before I know I've had high gluten food before-hand.

 

Any insight? Or Help? I do have a Doctor's app on Wednesday morning so that's the main thing.

 

x

[ravenwoodglass]

Welcome to the board. It sounds like you are having a real rough time. Good to hear you have a doctors appointment this week. Be sure to tell him in detail how you have been feeling. Do ask him to run a full celiac panel on you if he doesn't offer one. Do not stop eating gluten before your celiac testing is done. Hopefully the doctor will run a full batttery of testing on you as your symptoms could be due to many things.

Keep us posted on how your doing and if you start feeling really bad don't hesitate to get yourself to the ER while you are having an episode. I hope things get figured out soon for you and you are feeling better.

[Charlotteee89]

Thank you for replying. 

 

I've intentionally not eaten food containing gluten today - problem is we have hardly anything in the house that doesn't contain gluten so I've had less food than normal that has resulted in me feeling even sicker due to hunger so I've had to resort to eating food with gluten so I don't pass out.   I've also had a mouth ulcer all week (get them every so often) which I've read can be a sign of gluten intolerance/sensitivity/celiac disease. 

 

Fortunately I'm off work all week until Friday so I'm really hoping I'm not still ill as I can't afford to take any time off sick.

 

I know my symptoms could be anything I'm just thinking maybe gluten is the problem due to the irony of the symptoms when I've eaten foods containing it. Could well be a b12 deficiency, something hormonal, etc. 

 

I've no reason to be stressed for me to have such severe panic-like symptoms, I've suffered from a Panic Disorder for years but I always knew what the trigger was & I could easily get out of it & feel fine, I also never felt so nauseous. & It would take a lot to have a full blown panic attack in the first place. Maybe the gluten is causing it? I know anxiety & panic attacks can be caused by gluten. I just have no idea where it's all coming from over the last few months.

 

So odd & so debilitating. 

[GFinDC]

HI Charlotte,

 

Welcome to the forum!

 

It is possible you are reacting to gluten.  There is a celiac disease panel that can be done to test for antibodies in the blood.  There are several tests because the body makes several different kinds of antibodies.  As Raven said, it is important to keep eating gluten as normal until all the testing is completed.  Usually an antibodie tests is done first, and then possible an endoscopy later if the antibodies turn out to be positive.

 

Celiac disease antibodie tests

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

 

Helpful threads:

FAQ Celiac com
https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
https://www.celiac.com/forums/topic/91878-newbie-info-101/

[anand]

Panic attacks can also be caused by celiac and other gastrointestinal problems... The stomach is the 2 ns brain...!!

Open Original Shared Link

It stomach has a brain , which is the size of a cats and intelligence of a pig.....

[Charlotteee89]

So... Went to see a GP this morning (not my normal one as she's on maternity leave) which was basically a complete waste of time. About 3 years ago I was suffering from IBS & was referred to a Gastrologist who did several tests on me, one was a simple blood test for Celiac Disease & that came back negative so she said because of that I can't possibly have Celiac Disease now & so she just gave me a leaflet for a mental health service in my area for me to get in contact with... No blood tests as I had some (the one's I mentioned in the first post) in November.

 

That's it. 

 

I think I'm still going to try going gluten-free for a week or so to see if my symptoms/Anxiety calms down however. 

[anand]

Going gluten free really helped my mother with her anxiety.. . She found the effect at about 3 weeks... U may want to try a longer gluten free diet....

[tallypop]

My gp was like that with me, see another gp and push for a referral I have been sick for three years on and off. Leaving it will do you no good in the long run, there's something wrong and it's your right to get medical care for it.

I tried to leave things and see what happens but ultimately it could just get worse, I hate to think of the time I have wasted just hoping things will get better on there own x

[Charlotteee89]

I'm still not well mentally but I haven't managed to go on a gluten-free diet! I'm thinking it's me not the gluten.. But who knows? I'm not sure how quickly Anxiety/Depression can kick in or whether it can be a gradual build up when it's related to gluten? A lot of my Anxiety/Depression at the moment seems to be related to the panic attacks I had last week & all the thoughts that went through my mind during it which have unfortunately stayed in my mind & I'm now focusing/obsessing over them like mad which is leading me to have bouts of severe Anxiety & low mood. But saying that I've no clue whether these bouts could also be after I've eaten food with gluten in...

 

Deffo going to have to try a gluten-free diet for a few weeks just to see.

[anand]

have u checked ur b12 and vit d levels.... if not, pl check them

[NoGlutenCooties]

I would get a new doctor.  Anyone who tells you that you can't have Celiac now because you didn't have it 3 years ago is an idiot. 

Also, have you had your blood sugar levels checked?  What you describe sounds a lot like low blood sugar.  Try making sure you eat something with protein in it every 2 - 3 hours and see if this makes a difference.

 

Good luck!

[Charlotteee89]

have u checked ur b12 and vit d levels.... if not, pl check them

 

I've had my b12 & iron levels check, b12 levels were fine but I am pretty anemic so I'm taking 2-3 iron tablets a day.

 

I would get a new doctor.  Anyone who tells you that you can't have Celiac now because you didn't have it 3 years ago is an idiot. 

Also, have you had your blood sugar levels checked?  What you describe sounds a lot like low blood sugar.  Try making sure you eat something with protein in it every 2 - 3 hours and see if this makes a difference.

 

Good luck!

 

I was thinking about getting a second opinion but I've had a doctor appointment over the phone last week & she (a different doctor) recommended CBT (which I'm now seeing a Therapist for early next week) & she was the one who actually did fill out a blood test form for me. & I've had my blood sugar levels checked before a few times but not thoroughly via one of those fasting situations.

[Charlotteee89]

Also, today I've purposely not eaten a lot of gluten - so far only a slice of toast. I woke up this morning (it was actually around midday infact) feeling pretty relaxed, not too anxious. About 20 minutes or so later I ate a slice of wholemeal toast & I certainly noticed my anxiety/depression levels went up. For my dinner I had a jacket potato & bacon (no gluten) before I went to work (I work evenings) but noticed I was exhausted during the first half of my shift & pretty anxious. Not sure whether this is due to my anemia or because of the toast I ate. I started to feel a bit more 'normal' gradually, not so tired & spaced out. Also my anxiety levels went down a bit. Since work all I've eaten is snacks like chocolate that I know don't have any gluten in them & I feel pretty relaxed. Normally at night my anxiety is worse, but tonight not so much. I do tend to snack a lot at night (gluten containing snacks) so I'm feeling pretty peckish. 

 

Not sure if it's just a coincidence... But I'm definitely going to be keeping a very close eye on myself after I've consumed gluten. But at the same time I don't want to consume my mind with gluten stuff so it's actually distracting all my anxiety issues. 

[NoGlutenCooties]

Also, today I've purposely not eaten a lot of gluten - so far only a slice of toast.

 

FWIW... there's a lot of gluten in a piece of toast.  When folks do a gluten challenge they eat 2 pieces of bread each day.  You're eating at least half that (the piece of toast plus whatever hidden gluten or cross-contamination is in the other foods you're eating).

Just don't want you thinking that you're barely eating any gluten by "only" eating a slice of toast.  A slice of toast might as well be a whole loaf for a Celiac.

[Charlotteee89]

FWIW... there's a lot of gluten in a piece of toast.  When folks do a gluten challenge they eat 2 pieces of bread each day.  You're eating at least half that (the piece of toast plus whatever hidden gluten or cross-contamination is in the other foods you're eating).

Just don't want you thinking that you're barely eating any gluten by "only" eating a slice of toast.  A slice of toast might as well be a whole loaf for a Celiac.

 

I meant it in the sense that I'm not eating a lot of different food with gluten in, just the toast. Today, so far I haven't eaten any food with gluten in & I definitely feel more relaxed & not as anxious as I have been the past few weeks, I don't feel so spaced out & 'unreal'. But again, it could just be a massive coincidence. 

 

My mother's friend who's a Dietitian advised me to not go completely gluten-free for 2 weeks first but maybe go gluten-free for 2-4 days then add it back into my diet for a couple of days & keep doing it that way. Then maybe try a full 2 weeks of gluten-free. That's only because not eating much if any gluten seems to calm my anxiety down quite quickly, but that's only if I do indeed keep noticing a difference, if I don't then she suggested doing the full 2 weeks. People don't always notice a major difference straight away after going gluten-free, she just wants me to try different options first. Whatever's easier for me. 

 

Last Sunday I had 2 slices of toast for breakfast & I felt awful, mentally for most of the day. Then I had a roast dinner which again contained gluten then I snacked on biscuits etc throughout the night. I went from being very anxious/feeling very low to feeling pretty good in the space of not even 24 hours which the Dietitian thought was interesting. As far as I'm aware only the toast I ate yesterday contained gluten. 

[Charlotteee89]

Update for anyone who's interested.

 

Like I said last Monday I felt pretty good! I had no gluten based foods at all all day & my anxiety/ocd/depressive moods were very low almost non existent. Tuesday I had a little before work but didn't feel too bad just a bit anxious & nauseous. Tuesday night I had biscuits & felt quite nauseous & lightheaded before I went to bed. Wednesday (yesterday) I had toast again & a meal before dinner which didn't consist of any gluten but when I got to work I did feel a bit anxious & flustered & I felt exhausted & really brain fogged. Last night I did eat more toast & biscuits general snacky stuff & again I felt anxious & shaky & had twinges of nausea. Today again I've had no gluten & I've felt better throughout the day. It's also my time of the month today so it could all easily be down to that for all I know.

 

I'm going to continue being gluten-free as much as I possibly can over the next few days to see.

[124chicksinger]

I meant it in the sense that I'm not eating a lot of different food with gluten in, just the toast. Today, so far I haven't eaten any food with gluten in & I definitely feel more relaxed & not as anxious as I have been the past few weeks, I don't feel so spaced out & 'unreal'. But again, it could just be a massive coincidence. 

 

My mother's friend who's a Dietitian advised me to not go completely gluten-free for 2 weeks first but maybe go gluten-free for 2-4 days then add it back into my diet for a couple of days & keep doing it that way. Then maybe try a full 2 weeks of gluten-free. That's only because not eating much if any gluten seems to calm my anxiety down quite quickly, but that's only if I do indeed keep noticing a difference, if I don't then she suggested doing the full 2 weeks. People don't always notice a major difference straight away after going gluten-free, she just wants me to try different options first. Whatever's easier for me. 

 

Last Sunday I had 2 slices of toast for breakfast & I felt awful, mentally for most of the day. Then I had a roast dinner which again contained gluten then I snacked on biscuits etc throughout the night. I went from being very anxious/feeling very low to feeling pretty good in the space of not even 24 hours which the Dietitian thought was interesting. As far as I'm aware only the toast I ate yesterday contained gluten. 

I am no expert on this; I am new.  It seems to me if you want to rule out gluten, you need to not be eating it for longer than a meal or a day.  Toast and biscuits doesn't sound like a good diet to have generally.  While I am not yet off gluten, I do know when I'm trying to eat more healthfully I opt for fresh fruits, veggies, lean meats, soft cheeses.  As I am diabetic I opt for a Glucerna drink for breakfast a few mornings; its easy and light, and not harsh on my digestion.  

 

Since no one else seems to be answering you, my 2 cents is to go longer without obvious gluten, and try to find the hidden gluten and avoid it as well.  Maybe try for a week as a really good experiment length of time and see if you feel better.