Newbie Going It Alone - Would Love Some Advice

[Hd7747474]

Hello there,

I apologise if I have posted in the wrong forum...I didn't know where would be best! I just wondered if anyone could give me any advice as I am having to go it alone right now.

I'm female, 31 and have been having digestive problems for 8 years. It all started after a very stressful summer where I had been going for treatment for an anxiety disorder. I was in a high state of anxiety for 3 months and when it all died down, I suddenly started to get very nauseated after my evening meal. It would come in waves and usually happened with intestinal cramps. This went on for a while and I got to the point where I lost a lot of weight because I was afraid to eat. I would bloat right up and have burning in my left side (colon area).

To cut a long story short, it never really went away and has gradually got worse to the point where I'm having problems every day after most meals. The main symptoms I experience are:

1 - Bloating in upper and lower abdomen

2 - Waves of nausea - particularly when my bowels cramp/move along or if I need to 'go'

3 - Burning sensation in my colon.

4 - Sharp pains where I get the bloating.

5 - (SORRY ABOUT THIS ONE!) Strange white pieces in my bowel movements. (Malnutrition?)

6 - Diagnosis of Chronic Fatigue Syndrome.

7 - My skin is going dull and see-through (Malnutrition?)

8 - My hair falls out all of the time. (Malnutrition?)

9 - (SORRY AGAIN) My periods act up.

10 - Eczema and little water type blisters on my hands.

11 - Adult acne.

12 - (SORRY FOR THE 3RD TIME!) Sometimes constipated, sometimes not - varies day to day.

13 - General 'yuck' feeling most of the day, and unable to sleep from nausea at night. A gradual decline in health.

I'm sure there are more symptoms but I don't know what is causing what right now.

Unfortunately, I do suffer from multiple anxiety disorders and so whenever I mention things to my any of the different doctors I have tried they all brush it aside as IBS and don't consider other things... which I guess I can understand, but none of the medications for IBS have ever taken any of the symptoms away.

As I struggle to leave the house and feel that my doctors won't take me seriously due to my other problems, I have started a wheat/gluten free diet. I have been on it for 4 days and already I am not seeing as much bloating. The nausea is there but feels like someone has turned the volume down. I still burn a little, but again, it's less and could be due to the colon being sore for so long?

Anyhow, I'm going to give it a month and see how it goes, but just wanted to ask if anyone thought I was on the right track for a possible gluten intolerance? Also, when you go 'gluten free' for the first time, does it take a while to see an improvement or is it quite instant?

Any help or advice would be very gratefully received!

Thanks

[Brandiwine]

It does sound like symptoms of Celiac, you may want to try getting tested before you stay on the GFD just to make life easier. Once you go gluten-free and feel better getting glutened is horrible and most of us feel like we can't consume gluten long enough for a test or we may literally die!!

Results are different for everyone, in the first week my D and cramps and depression got better then I went through withdrawal and slept all the time and very very emotional crying over everything. Then a few great weeks and now it's off and on I think I may have other food issues. But give it a couple weeks you should she some improvement if its Gluten causing your issues (and I think it probably is)

Welcome to the forum!!!!

[designerstubble]

Ditto the above!

I too also saw a general decline in health, to the point of thoughts of impending doom. On a subconscious level I think I knew my body was closing down. Uh sounds awful. I also had little water blisters here and there, often on fingers and around ears and jaw. My facial skin went transparent, and haggered looking, shrivelled almost. Amongst other symptoms obviously, but I definitely used to look in the mirror and wonder what had happened to age me SO badly in just 2-3 years. I didn't look 39, I looked 49. I'd always looked younger!

Until you are diagnosed you won't know for sure... As far as how long before feeling better... Everyone is very different (you only have to read on this forum) but for me, I started feeling physically better after a week (less bloating and wind), at 2-3weeks much better with the GI symptoms but the crying kicked in! Along with a host of other stuff! Good luck... It's a long road to recovery for some of us... Others seem to get better very quickly...

[Pegleg84]

Welcome to the forum!

 

Yep, that does sound like Celiac. I was definitely at the "everything I eat makes me feel like crud" point when I went gluten-free. (also, no worries about "icky" details. We talk about that stuff all the time here).

As Brandywine suggested, you should see your doctor and try to get testing done before you go completely gluten-free. It's better to hold out a few more weeks now, than stop eating gluten all together, feel better, then have to go back to eating it again and feel worse. However, if you'd rather trust your gut and forego testing, that is your choice. It depends on whether you really need a definitive answer or not. And if your doctor doesn't take you seriously, insist that they do testing, or find someone else.

 

As for healing, some of us saw a big difference in the first couple weeks, but it can take several months to a couple years (or more or less) to get back to "normal". If you've seen a difference even in the past few days, then you're probably onto something.

 

Good luck!

[GlutenStinks15]

Welcome! I'm fairly new at this myself - 8 weeks into Celiac diagnosis.

 

I can tell you that within a few days I had no more stomach cramping and nausea (but my symptoms were not as severe as yours are.)

I am still experiencing some mild symptoms two months later, but they're almost gone. Everyone's body has a different time table.

 

Good luck! And we're all here if you need us.

 

This is the best most supportive place!!

[Hd7747474]

Hello everyone!

Thank you all so much for replying to my long post!

I think you are right - it would be better to be tested before I get too far into the gluten free diet. I struggle to leave the house to be honest....can the answer be found with a blood test or do you really need the more invasive tests I've read about? I don't think I could go to the hospital right now!

I was really sorry to hear what you have all been through, but I'm encouraged to hear that things do improve eventually....I will keep going! I have lost the whole of my 20's to feeling poorly and staying inside with digestion problems!!

Day 5 and I'm still not bloating or having nausea anywhere near as much! I'm still burning and still getting the 'scary white pieces' but I'm beginning to feel hopeful that life dosen't have to be like this

@designerstubble - Just out of interest, did your skin ever go back to normal again and not look so transparent? I really hope so x

@pegleg84 - Thank you! You wouldn't believe how many times I deleted the icky details and then re-typed them!!

Thanks again to each of you and for making me feel welcomed. I really appreicate it

Take care everyone

xx

[designerstubble]

Little leaf lost (great name)... I am 7-8 months gluten free. I aquired many allergies and intolerances since being gluten-free and have had my diet restricted severely. I have had all sorts of problems and strange and weird things going on... The first 3months I felt better overall, appearance improved... I thought at the time quite a lot. But since realise that it was only a bit. But that little bit at the time was a godsend as I felt dreadful about myself. (I too had big hairloss. My hair seemed to 'drip' off. Horrid.)

By the time I hit 6 months I can easily say I have knocked off most of those 10 extra years. Perhaps not all, but I don't look much older than my now 40 years. On a good day I even look my age! My skin improves every month. I struggle with my hair. It stopped shedding for 3 months after I took vitamins but recently started again... No idea why, very upsetting. Although my hairdresser said it was probably due to it being spring (I live in the UK!)... Must admit, never heard of shedding hair in Spring?? I hope she's right and it's just that.

Just while I remember too, I wanted to mention the white pieces in poop... What do you mean? I used to have white areas of poop intermingled with 'normal'... Almost like a milk and white chocolate thing going on!!! (Who's grossing out now?!!)... Can't say what caused it... I know that fats are generally not digested well when we are active with celiac, so I'm sure other stuff isn't either. Please go and get tested, don't delay. Once you know, things will only get better... hugs from blighty

[designerstubble]

Ps. I had irregular menstrual cycle too, terrible bloating and gas (omg the gas), awful digestion noises sometimes. Alternate diarrhea and constipation. Bad spots on face but not acne. Teeth were brittle and became transparent. Pins and needles, burning sensation in feet and hands (neuropathy)... List goes on! Some have resolved, actually most have.

[eers03]

Be patient!  Stay on the diet longer than a month.  Reason being, I had some things improve but it was several months of being gluten free to see some things resolve.  I encountered some anxiety as well and it has drastically improved.  Take the recommendation above and ask for the blood test.  Results are most accurate while you are eating gluten. 

 

I really think the gluten-free diet will help you feel better.  Give it plenty of time.  You can't go gluten free for a couple days and then boom, all better.  It's a process.  

[Hd7747474]

Hi again

That's really encouraging that your skin continues to improve - I've not been able to look at myself recently due to the mess I'm in! I understand how dreadful you felt.

Sorry to hear about your hair-loss. It's very worrying when the sink is full ((hug)). I'm considering a pixie crop to see if taking the weight out helps. I live in the UK too....maybe your hairdresser is on to something

The white pieces are like little chunks. All different sizes. Sometimes there are none, but when I've been burning or cramping, there are more. I worried for a while that it might be part of my intestine or parasite eggs or something scary like that, but they are too random and not uniform in shape. Since I've been looking at the possibility of a gluten problem, I've seen it mentioned as a symptom. Fats or undigested food? I hope it is anyway!

Thanks again

[surviormom]

It only gets worse unless you address it, I went years like that.  When I asked a doctor it was oh its just Pregnancy hormones, or after no more babies, its just perimenopause.  Well, wasn't.  See a doctor and get tested.  Request the full tests as listed above.  Even after a year without gluten my insides are still in havoc.  I would like to go back and be able to test at your age and know what I know now.

 

Do not worry about the graphics, I was uncomfortable spelling it out at first too.  I only go about once a week, when I am in distress.  For years, it was like that, once every week or two.  When I am feeling well, and since going gluten-free I have had several months of feeling well, I was normal.  Never knew what normal was before, in my life.  Periods had become regular too, until 2 months ago, then it all fell apart, but that is another topic.

[Pegleg84]

As people with, er, digestive issues, we tend to become pretty familiar with our poo...

 

Get the blood tests done. If they come back positive, there you go. If they don't, ask for a biopsy. (False negatives on blood tests are common). I think you can cut back on gluten while waiting to get test done, but still have to be eating the equivalent of a couple pieces of bread a day or something like that to ensure good results.

Regardless of the results though, you should probably stick to gluten-free if it makes you feel better.

[designerstubble]

Hi again

That's really encouraging that your skin continues to improve - I've not been able to look at myself recently due to the mess I'm in! I understand how dreadful you felt.

Sorry to hear about your hair-loss. It's very worrying when the sink is full ((hug)). I'm considering a pixie crop to see if taking the weight out helps. I live in the UK too....maybe your hairdresser is on to something

The white pieces are like little chunks. All different sizes. Sometimes there are none, but when I've been burning or cramping, there are more. I worried for a while that it might be part of my intestine or parasite eggs or something scary like that, but they are too random and not uniform in shape. Since I've been looking at the possibility of a gluten problem, I've seen it mentioned as a symptom. Fats or undigested food? I hope it is anyway!

Thanks again

I nearly had a crop too! But I just couldn't chop my long locks off it's horrible. And I know about looking the mirror... I avoided the mirror for 6 months or more, infact I even stopped wearing make up and going out because I felt so ugly. There you go. Crap hey?

Let us know when you go for your test

And your poo sounds like mine was well before my 'serious' symptoms started. It's like what I had. And like you, it wasn't all the time. Just sometimes. Thats why i ignored it for so long... Where abouts are you in UK. I'm on the south coast in Bournemouth. Kimmy

[Hd7747474]

I nearly had a crop too! But I just couldn't chop my long locks off it's horrible. And I know about looking the mirror... I avoided the mirror for 6 months or more, infact I even stopped wearing make up and going out because I felt so ugly. There you go. Crap hey?

Let us know when you go for your test

And your poo sounds like mine was well before my 'serious' symptoms started. It's like what I had. And like you, it wasn't all the time. Just sometimes. Thats why i ignored it for so long... Where abouts are you in UK. I'm on the south coast in Bournemouth. Kimmy

((Hug)) I can totally relate to that! I feel for what you went through. It has really contributed to my already messed up head. I do kind of have weight/food/illness and looks issues messed up in my anxiety disorders. I used to manage a few trips out a week, but now I'm staying in through either fear of having a nausea attack/digestion wobble or because I feel my appearance will disgust people! Not to worry though - things are starting to look up now as I feel this may be the answer! Day 6 and still no bloating! The signs are positive that gluten is leaving my system! Burning, yep, but I've always bloated since this started 8 years ago!!

Your poop has put my mind at rest!! (What a thing to say) I'm building up the courage to use the phone to call the docs in a minute to see about a blood test. Being a small village (I'm on the Derbyshire border), you usually have to wait 2 weeks to get in, but I'm going to ask for a phone appointment. Think I might be able to be braver that way and hopefully stand my ground if she starts telling me it's IBS again!

Take care everyone - thanks again and have a nice day!

[designerstubble]

((Hug)) I can totally relate to that! I feel for what you went through. It has really contributed to my already messed up head. I do kind of have weight/food/illness and looks issues messed up in my anxiety disorders. I used to manage a few trips out a week, but now I'm staying in through either fear of having a nausea attack/digestion wobble or because I feel my appearance will disgust people! Not to worry though - things are starting to look up now as I feel this may be the answer! Day 6 and still no bloating! The signs are positive that gluten is leaving my system! Burning, yep, but I've always bloated since this started 8 years ago!!

Your poop has put my mind at rest!! (What a thing to say) I'm building up the courage to use the phone to call the docs in a minute to see about a blood test. Being a small village (I'm on the Derbyshire border), you usually have to wait 2 weeks to get in, but I'm going to ask for a phone appointment. Think I might be able to be braver that way and hopefully stand my ground if she starts telling me it's IBS again!

Take care everyone - thanks again and have a nice day!

So.... did you??? did you??? did you????

What happened... ??? I HOPE you got yourself a blood test pleeeease. If you haven't, I'll bloody call them for you!! Seriously. 

Listen, you'll get there you know. And if it is celiac (looks very possible), you're in VERY good company. I love these guys, they are the best, don't bother with any other forums!! Don't forget to update us.

[nvsmom]

Did you get your appointment? Request the full celiac panel when you go. The tests are listed on page 12 of this link:

Open Original Shared Link

 

Don't forget to list anxiety as one of your symptoms when you go to the doctor; it's not an unusual one but it tends to not be as quick to resolve as the GI issues once you do go gluten-free (after testing).

 

Good luck. 

[Hd7747474]

Hello everyone,

Sorry for the delay. I just had my telephone appointment. It wasn't very successful I'm afraid. I explained my symptoms and how they seem to be clearing up now that I've cut out gluten and that I would like to request a blood test.The doctor basically said it was all IBS because I have anxiety disorders and my stress is causing it.

I explained my worry about the white undigested food/fats but he wasn't concerned and implied I shouldn't check so much..... He said I'd been tested for lots of things in 2009 and celiac was one of them. All came back negative. I felt like a hypercondriac. I felt like I was 9 and being told off in the Headmaster's office!

I feel really upset but if they have tested in 2009 then I guess that's it. I am going to continue gluten free for the time being because my bloating, nausea and pain are getting less all the time.....I just hope the undigested fat/foods start being digested soon too.

Thank you all for your support. I hope you all feel better and continue to heal too (((hugs))

[nvsmom]

Celiac disease can crop up ANY time in your life. It is recommended that family members of celiacs get tested every few years because it can hit at any time. You might have been negative in 2009 but that was four years ago and things can change....your doctor should know that.

You might want to request copies of your past labs so you can help yourself towards a diagnosis. Unfortunately all doctors are not good at figuring out a diagnosis. I discovered I was a celiac (based on symptoms and a home tTG IgA test) and told my doctor, luckily his labs backed me up. I also discovered that I had hypothyroidism, but unfortunately it took 15 years for doctors to believe me... It is partially my fault because I didn't push for what I thought to be true and as a consequence my prime years were not that healthy.

Anyway, my point is that you will need to push for your own health, maybe even do some doctor shopping if yours will not facilitate your pursuit of better health. Knowing what labs were run in the past is a good start. Most doctors just run a tTg IgA for celiac testing but it often is not enough - the tTG IgA misses up to25% of all celiac cases. The DGP IgA and DGP IgG were not around back then and those are very reliable tests.

If you decide not todo any more testing, I wish you luck on the gluten-free diet. I hope you feel well soon.

[Pegleg84]

You should INSIST on getting a biopsy done. Blood test can often show false-negatives, or the Celiac hadn't kicked in enough when you were last tested. One of my biggest symptoms was anxiety. My blood tests came back negative twice, possibly due to the fact that its on both sides of my family. My sister's also came back negative, but they saw vili damage in her biopsy, so that was enough for me.

 

Either way, you might have to find a new doctor, one that will test for celiac and support your gluten-free diet even if it does come back negative. You could be NCGI. And when it comes down to it: if it makes you feel like crud, don't eat it. You don't want to be battling against your doctor for the rest of your life.

 

I think we've all had those awful doctor moments, but we have to be tough.

 

Happy healing

[LizMaude]

I did testing and was diagnosed 7 years ago.  Since my diagnosis I've seen a GI doctor once.  I don't see any strong reason why testing is necessary.  If you try the diet for a while, start to feel better - usually if you eat gluten again it'll make you feel horrible.  Just be sure that you are completely gluten free.   I do go to my GC once a year and have my nutrients and thyroid checked, also see the OBGYN - was in the hospital to deliver my first baby and didn't have a problem staying gluten-free while I was there. After being gluten-free for a few months you still have health issues i'd go back to the doctor and explore other options. 

[Brandiwine]

I don't know why he wouldn't be concerned about undigested food! That's kind of important. I don't feel like telling you not to pay so much attention is good advice. How else will we find answers if we don't pay attention to the problems?!

The good news is the GFD is helping you. You know that for sure, so feel proud that your taking care of you. I'm sorry about how he made you feel, I think we've all been there....