Reoccurring nausea and abdominal pain

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Okay before I start, I know the best thing is to go to my GP. I am aware that no one can diagnose me on TSR. Problem is, this is an ongoing problem which no one has yet dealt with (it's been years) and I am not sure how best to resolve this issue which has been causing me pain and discomfort for way too long...

So about 7 years ago I was recovering from anorexia. I am now 24. Anorexia caused me to have Raunauds syndrome. Prior to anorexia I was pretty healthy though got abnormally red when running long distance-maybe linked to my relatively low blood pressure? Since anorexia I have less hair (some grew back but it is a lot thinner now and more fragile). I have also had a whole host of digestive problems and immune system issues which I never had before.

I started on the pill about 5 years ago. 4 years ago I started getting awful nausea symptoms. I would feel motion sickness when I drank tea, water, ate anything. I would have to lie down a lot. I was never physically sick but felt as though I could be. I went to the Doctors and the first thing I was asked was "are you pregnant?". Though I was in a relationship at the time, I knew this wasn't true. I was tested for helicobacter pylori and came out negative. I got tested for coeliacs disease and also came out negative. I went on a really long gluten free diet whilst waiting for an endoscopy in case I was wheat intolerant, this didn't fix much. I also had what seemed like reoccurring tonsil stones-sometimes when I swallowed food I would have an awful taste at the back of my throat, and would cough up very smelly tiny white soft balls... 

My endoscopy was finally confirmed but for a date when I was unavailable-I was on my Erasmus year, but I also no longer had the symptoms of nausea so didn't think it was worthwhile. At the beginning of my Erasmus year I had a very strange 2 week period in which I had diarrhea on a parr to that I had had in India years before. I couldn't eat anything without it coming out immediately. 

After this two week period I was strangely fine again. This lasted for over a year. A few year later I got those strange tonsil stones again but the nausea didn't come back until recently.. 

I came off the pill when I split up with my long term boyfriend last year (September) and after a couple of months my period started to become really long and heavy. After a few more months (by February) my life was dictated by my periods-I was so super tired that I had to skip class and sleep all day a couple of days before the onset of my period, the cramps were unbearable. 

At the beginning of summer I got together with my best friend and we are now in a relationship. Towards the end of summer the nausea I had experienced a few years ago seems to have returned. It was not continuous but bothered me quite a bit when it was there. I also seem to be more susceptible to illness than I have been in the last year, it seems I am ill once or twice a month. The nausea disappeared for a while but a couple of days ago I got extreme cramping, constipation, nausea and felt really tired. I felt like anything I ate caused this feeling. I am worried that this is pregnancy as I have had unprotected sex, but I am also concerned as to whether there is some reoccurring virus/parasite attack which could be showing itself again. I am due to get my period in the next couple of days so if I get that then I know I am not pregnant. 

Any ideas what this could be/whether symptoms are linked/how I could try and figure out what it is this time, if not pregnancy (I hope it isn't that!)

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8 Replies

  • Posted

    Hi Mysticalfluffy,

    Ok first the second you said you got tested for Raynaud's, it's celiac.  You can't have Raynaud's if you don't have celiac as they are tied to one another. 

    To get tested for either a blood test or endoscopy you need to be on a gluten challenge which means means easily 6-8  weeks of consuming gluten before either a blood test or endoscopy can give an accurate result.  Being gluten free before either one of those tests will lead to a probably negative result.  Your villi in your intestines have time to grow back if you go gluten free beforehand as will your gluten levels can return to a normal range if you are off gluten before hand.  Gluten causes inflammation anywhere in the body and symptoms are different for each person which makes it difficult to diagnose.  It usually takes 10 years to get a proper diagnosis.  It would explain your tonsils, exhaustion, diarreah.  The pain could also be gall bladder related as it affects 60% of all celiacs as well as our pancreas and appendix.

    It's harder to say you are on a gluten free diet without knowing all the pitfalls of where hidden gluten may be.  It's in the usual culprits such as breads, but it's also in sauces, gravies, medication, canned foods, spices, some candies and sweets.  Any amount of gluten no matter how small will set off an immune reaction and it can take months to a couple of years to begin to feel better.

    You need a proper diagnosis.

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    • Posted

      Hi, Laura - I have Raynaud's and not Celiac. They're not that linked...I've had the blood test and the endoscopy with biopsies, so it's fully ruled out in my case (although I've not had genetic testing done yet, and my son does have CD), at least at this point. Glad you also replied about the gluten-elimination invalidating her test results!  I suspected CD, too!

      I did not know that CD patients frequently have gall bladder/pancreas/appendix issues, too! My son has issues from time to time and I'll keep that in mind! Also, his young friend with CD who is seeing his dr between appointments for a new wave of the old symptoms with no contact with gluten...so his mom is aware...thanks!

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    • Posted

      Hey Aveline,

      If your son has CD, I'd get the genetic test done as it's a genetic disease and it's possible to have both a negative blood and biopsy if they didn't test all areas of your intestines and still be positive for celiac.  I'll bet dollars to doughnuts (odd expression I know for Celiac) that you have one or both of the genes responsbile for this lovely little adventure in our lives known as gluten free lol. 

      Yes it's possible even with being gluten free to have an wave of symptoms and higher gluten numbers.  It's called refractory celiac or something along those lines.

       

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    • Posted

      Thanks, Laura! I'm just waiting for my next routine bloodwork and will have this as well (I'm holding on to the Rx for it, so I'll be ready!)  It may sound strange but one "benefit" of waiting for me is to get my sister to test one of her sons...if I don't carry the gene, she'll insist it's my husband's side and he will never be checked. (Same for my husband's side, we know of one person in danger of CD and he thinks it's my side and not keen to be tested, tho he did agree to the blood test now).

      One form of Raynaud's is auto-immune and I'm not sure I have that type, but auto-immune issues tend to travel in multiples...so that combined with my IBS symptoms and my son's CD diagnosis all have me thinking that yes, I have a gene or two and...well, just a matter of time...

      As for my friend's son, I think they're looking for other conditions to rule out refractory sprue...lactose or other intolerance, SIBO, etc. Thanks!

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    • Posted

      You're welcome Aveline.  By the way, I love your name.  It's not common here. 

      The second you said IBS, combined with your son's CD, if even one of those genes comes back as you having it, it's not IBS you have, it's Celiac.  I am a member of a celiac group on FB and I can't begin to tell you how many people were misdiagnosed with IBS when it was actually Celiac.

      Giving up gluten was a piece of cake.  Giving up dairy due to my lactose intolerance was hard.  I miss my cheese and yogourt sad

       

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  • Posted

    WOW - HUGS to you!! That's quite a lot for a young life...

    Where to start?  First, your endoscopy wasn't totally valid, if you had it. You should have been eating plenty of gluten and not eliminating it...so that may need re-doing.  I say "may" because Coeliac was partially ruled out for you by blood test, although that's invalid, too, if you weren't ingesting gluten at that time, either.

    So, let's say it's NOT CD, but it still appears that you have something systemic - something that can affect many parts at once.  How are your thyroid levels? On & off the pill may cause great hormone fluctuations, so that could play a role, but thyroid also explains a great deal of what you're experiencing.

    The tonsil stones are somewhat bothersome to me...that's usually a bit of an infection, although not always. To have so many does sound like some kind of infection, though. and even if it's "small", if your body is chronically fighting infection, it could have an all-over effect.

    What is your nutrition like now?  How stressful is school? Is it possible that you do have a gut infection, parasitic or otherwise? Those causes and thyroid seem likely given your history and symptoms. I'm no doctor of course, so please check with one and let us know how you get on.

    Good Luck!!

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  • Posted

    Thanks for the support Aveline.

    My diet now is pretty good. I am a vegetarian. I eat and cook at home mostly, lots of Asian food and plenty of vegetables. I also do eat biscuits and cakes but in a pretty well balanced diet.

    Average day for me:

    Goats yoghurt with mango for breakfast, sometimes with tea or coffee. OR porridge with yoghurt and blueberries, maybe with a bit of honey or maple syrup.

    Lunch: Salad, soup or toastie. Or something more substantial when my partner is around like a thai green curry with rice.

    Afternoon snack (if any) : 2-3 cookies, a piece of cake or some fruit and yoghurt or similar 

    Dinner: something well balanced, usually varied. Today Pho soup with rice noodles, tofu and vegetables. Yesterday had mushroom stuffed ravioli with tomato sauce and salad. The day before I made a stew with tofu, vegetables and sticky rice. 

    Pudding: ice cream (good quality, not too much) or a bit of chocolate or fruit. 

    Stress-wise, I am on and off. I have suffered from depression recovering from anorexia and often feel it alone. When with my bf I am super happy though do have financial concerns given that I am still doing unpaid internships with only a bit of part-time work and I'm mainly eating into my savings. I graduated from uni in July. 

    I do keep returning to a doctor and they always seem to treat it lightly/not be in a hurry to fix things. This is genuinely causing me pain and discomfort. 

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    • Posted

      You're doing a great job!!  It can't be easy to recover from anorexia - it's like addiction recovery! And, you're doing so well with eating exactly what we're supposed to be eating...with sweets in moderation and lots of veggies, fruit and lean protein! As a vegetarian, you're at risk for low b12 levels, which can be debilitating! (Look on the Pernicous Anaemia boards if you're curious)

      Please see a doctor and have full bloodwork done - including the Celiac Screen (eat plenty of wheat starting now), B12, Iron, D, etc. and thyroid...and anything else s/he feels is relevant. If yours won't do this, you need someone who will... You're too young for so many symptoms. A referral to a therapist may benefit you, too!  You've come very very far so you're made of tough stuff, but it doesn't hurt to have help! smile

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