At My Witts End!

[ReneeMartin]

Hi there guys! I'm brand new here, and found you're wonderful community after being told to research the gluten free diet.

To be honest things are starting to make sense! After 5 years of confusion (total and utter confusion) it was mentioned to me that I was showing signs of gluten intolerance. This was mentioned by a friend at work. She herself is celiac and after I had a panic attack she was helping me to recover a normal breathing rhythm when we started to get into the discussion of how crappy i constantly feel. And I kid you not, she is the first person to have listened to me without assuming I am a raging hypochondriac!

Basically I'm looking for some pointers as to how to get the doctor to listen to me the way my friend did! In the past year I have moved twice, but I am now settled so I can finally speak to a doctor without thinking about what a waste of time it is when I'm just going to have to explain it all again...

I'm just going to go ahead and have a whinge about what bothers me, and I'll put in there if anything seems to make it any better!

-nausea -daily

-bloating (like I'm 6/7months pregnant!) my stomach, thighs and face are most noticeable. i often cant gem my jeans on for the swollen legs... -daily this has become a joke among my friends but is very uncomfortable

-stomach cramps which are too high to be anything menstrual -daily

-aching joints ( currently having blood tests for arthritis)daily

-insomnia - day/nightly

-muscle ache -daily

-headache, which often turn to migraines -daily

-dizziness -daily (usually in the evening)

-constant fatigue, it makes me feel so week that the thought of going to the shop (just down the stairs) or anything like that fills me with dread as i know how getting back up the stairs will render me useless when i get in the door. -daily

-aching back -daily

-inability to catch breath or fill my lungs completely. This often starts my panic attacks cause i get the feeling i cant breath properly. my friends also pointed out that they hear me 'sigh' a lot. I'm actually asked several times a day why I'm sighing.

-constipation

-woolly head, I'm not sure what to call this but to me it feels like my brain has been replaced by cotton wool! -weekly sometimes worse than other times and some weeks it can be all week others just once or twice a week.

-stiffness

-constant need to pee -daily

-very painful wind that i can feel breaking up inside me

-need to sit/lie down often

- gut pain, like I'm just about to have real bad diarrhea but then nothing happens

- usually unbalanced/uncoordinated due to dizziness

- i find it almost impossible to sit for any length of time... like at the cinema

- mood swings

- and to top it all off my stutter which had improved has started getting really bad again. Although I put this down to confidence dropping because i feel so crap all the time.

So does any of that make sense to people or is it just all in my head as one of the doctors had suggested? I'm at my wits end, I'm 20 and feel like I'm just about to celebrate my 100th birthday not my 21st! I cant believe after 4/5 years of feeling so rubbish all the time there is still no clear reason!

I'm ever more emotional these days cause i just want to be able to go out and do normal things. I'd like to go to work and not feel like I'm going to fall apart at the end of it especially since my shift are only 5 hours at a time. Id like to be able to wake up one morning and not feel like the day is going to be a battle from start to finish!

Thank you in advance if you read through this it means the world to me to just have an inkling as to what may be going on or on the other hand be able to rule anything out!

Renee!

[veronika]

First thing, it's not in your head. While I understand that stress (which you must be feeling) and anxiety can make symptoms worse they are usually not the cause. I've found that doctors like to say 'it's all in your head' when they have done every test THEY feel is reasonable and can't find anything wrong with you, even though you are dealing with serious symptoms. If you have had a doctor do the basics already, you need to investigate further. I know it's hard because you are tired and not in top form, but you need to be your own advocate in this (or get a loved one to come with you to help handle your appointments) and get to the bottom of it. It is not unreasonable to ask a doctor to test for Celiac disease or vitamin deficiencies after hearing your symptoms, so ask for it. If you are going to a new doctor it sometimes helps if you can get your test results transferred (if they are recent) if you have had a lot of work done so the new doctor can get a better picture of what has already been done without you having to go through the pain, and perhaps cost, of them again. On a personal note, I too suffer from stuttering, and it has gotten worse with the anxiety and stress of dealing with my own health/life, so I'd probably chalk it up to confidence levels as you suggested.

I hope you find some answers soon and can start to work on getting better again .

[MitziG]

Yes it makes perfect sense to us. Most of us spent a large portion of our lives feeling like that, and having doctors either ignore us, tell us we were depressed, or act like we were hypochondriacs. Don't expect to find a doctor who will listen. Could happen...but they are few and far between.

You do however, need to find a doctor who will do what you ask. You need a complete celiac blood panel done. Insist, don't ask. the tests you need to request specifically are:

Ttg Igg

Ttg Iga

Total IGA

DGP

Endomysial antibodies (EMA)

Most docotrs will do only one or two of the tests unless you insist. Now, also request a copy of all lab work be sent to you, and post it here. We will tell you if it is celiac. Can't necessarily trust that your doctor will.

If you have a positive blood test (which isn't all that common...blood tests miss 30% of celiacs, and can't ideentify gluten intolerance at all) the doctor may want to do an endoscopy to confirm the bloodwork. Your call. Positive celiac bloodwork is highly reliable...false positives just don't happen. But most drs want the visual confirmation before they will dx.

Fairly often, endoscopy will also miss celiac. Multiple biopsies need to be taken, and taken from the correct place. Many docs only do 1 or 2, or heaven forbid, do a colonoscopy to look for celiac! Its the WRONG end of intestine!! You would be surprised. So confirm before your appt how many biopsies will be taken and from where. (Should be duodenum)

Lastly, the most important rule...do NOT begin a gluten free diet until all tests, including endoscopy are done. Even if your doc says it is ok. Don't do it. Even a short time off gluten will mess up your tests and give you a false negative. Once the tests are done, whether you have a celiac dx or not, give the gluten-free a very strict (100% compliance) try for at least 6 months. Gluten intolerance cannot be tested for, is much more common than celiac disease, and will cause identical symptoms!

Spend some time on this board. You will learn more here than from any doctor. And relax! Health is on the way!

[Cara in Boston]

Your list sounds like classic Celiac Disease.

Bring your list with you to the doctor. It may also be helpful to find out more about your family history. While we had no (diagnosed) celiac in our family, I came across lots of aunts and uncles with other autoimmune disorders as well as GI "issues". Bring a list of any family members suffering from related AI conditions and any intestinal cancers, etc.

Maybe before you go to the doctor, do a little research and find one who knows about celiac. We were lucky in Boston but my sister in TN and brother in ID both had doctors who did not give them the correct blood tests and told them information that is simply WRONG. ("You can't have celiac disease because you are not underweight and malnourished", "You would know if you had celiac disease because you would have diarrhea every day", etc.) See if there is a local celiac disease support group and contact them to find out area doctors that can diagnose you.

DO NOT try the diet until after you have been tested! Not even for a few days.

Cara

[nvsmom]

HUGS Oh yes, that sounds like many of us around here... even the sighing for me. I suppose that's good and bad news all rolled into one, eh?

MitziG gave you great info and advice. I would like to add that you might want to request your doctor check your vitamin levels when you have the other blood tests done. Because over a quarter of celiacs have negative blood tests, vitamin deficiencies could indicate intestinal damage since the duodenum is where many vitamins are absorbed. Low vitamin levels are a contributing factor to many of the symptoms you listed which is a contributing factor as to why many celiacs have your symptoms.

Ask your doctor to check:

B12

Calcium

Iron

folate

K

And copper and zinc are often low in celiacs too.

Try to get tested as soon as you can. If you would consider having the biopsy, don't go gluten-free before that either since it will throw off the results. I had a positive EMA test, which only celiac disease can cause, so I decided to skip that procedure (just a personal choice).

Try to enjoy your last gluten filled days and treat yourself to the foods you'll miss since it looks like your gluten eating days are numbered. Regardless of your test results, I would try the gluten-free diet if I was you. With so many symptoms you have nothing to lose by going gluten-free and only good health to gain; you're too young to feel that poorly.

Best wishes.

[squirmingitch]

Everyone gave you excellent advice! I will just add a little note here about the stuttering. I have never, ever had a problem with stuttering (& I'm 55)...... until.....the gluten began to affect me so badly & my health was rapidly deteriorating. Then I began to stutter & sometimes the words would just come out as plain jibberish. I got to where I would make a joke of it in front of people & just go into a full fledged deliberate jibberish talk since I couldn't seem to make the correct words come out of my mouth anyway. In truth it scared the hell out of me b/c I didn't know why it was happening. You know what? Since going gluten free that has completely cleared up. No more stuttering or blubbering.

[ReneeMartin]

Thank you all for your advise and support. I've had a read through the forum and it seems I have a lot of learning to do! So much information it's untrue!

I will defiantly be mentioning to my doctor all those tests. I know they are currently screening/testing my blood for rheumatoid arthritis and a whole bunch of other stuff and should get the results back in the next few days. So we'll see what comes back out of all that and i'll get the names of the tests that he's run.

I've taken nvsmom's advise and had a chippy tonight. Even though I'm paying for it now :/ But hey ho hopefully this'll get sorted soon!

I think from here on I've just gotta be insistent that they explore every avenue possible and not let them fob me off with a bunch of rubbish right!? The possibility of me having a vitamin deficiency hasn't been suggested before either but on looking about here that looks like it might be quite common and maybe the culprit for having such weak nails and for those funny marks I get on them too!??

Another excellent point made was taking the list to the doctor. So I have it written out and will take it with me on my next apt and insist he hears me out with it! That way he'll get a better picture than just cutting me off and ordering bloods again. Cause appart from anything else im sick of the bruises they leave!

On the note of the stuttering, it's been a problem all my life and is so much better now but still really noticeable. Like you squirming itch i also trip over words or find my self at a loss for the word I need! and quite often when I see people raising their eyebrows just burst into my own jibberish language and make a joke of it. But it will be interesting to see if I end up on a gluten free diet, weather that makes a difference. (however working out if its the diet or weather it may be cause my confidence may increase when I hopefully start feeling better).

I would probably get the docs to listen more if I knew more about the family medical history. However I have no access to my father's side as he passed away when I was young and my mother and I are far from close unfortunately but there are some other people I could ask.

Again thank you for your help people. I'm hoping I can get the products that have been mentioned on here in Scotland? But lets take it one step at a time and cross that bridge when I come to it or I'm going to start getting REALLY overwhelmed!

Cheers, Renee

[squirmingitch]

Yep. Don't get yourself overwhelmed. First the tests. Then we'll work with you on the gluten-free diet & all the other stuff. For now just breathe... and eat that gluten!