Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Please Help! Could This Be Cd?

Jocelyn357

Recommended Posts

Jocelyn357 Rookie
Jocelyn357
Posted

Hi everyone. I am so glad to have found this board, and after a week of just reading, I've decided to seek some advice. So I appreciate any help you can give me. I know there are over 200 symptoms to celiac, and intolerance. I've done alot of reading on here already, but just wanted to see if my particular "set" of symptoms is typical.

-I have pretty much been constipated my WHOLE life (26 yrs). I have a BM maybe every 2 to 3 days, occasionally longer. Sometimes it makes me feel sick, other times no pain. Maybe because it's all I know. When I do finally go, sometimes it presents itself with stomach pains or diarhea. Not all the time. If it is a stomach ache, though, I almost feel like I'll pass out it hurts SOOO BAD.

-I have been chronically fatigued since childhood. I cannot EVER remember ONE DAY when I was not tired from beginning to end. Not in my whole life. It has always made it hard to hold a job/school, even socialize. I can go out for a bit, but am always the first to leave because I just need to lay down. I have learned every excuse in the book to tell people why I need to leave a get together, or why I cannot participate in something.

-Low immune system. If it's out there, I get it. When I get sick, I get REALLY sick. Usually end up in the ER. I never get just a "little" cold. I pretty much never feel good, so if I get sick, it's bad.

-Diagnosed sever panic disorder at 18, but had it since childhood. Taken med's for 8 years and don't suffer from "panic" often, but live with generalized anxiety pretty much all the time.

-Was always very thin until I turned 17, then WHAM! Overweight. Have lost significant weight twice, but unable to keep it off. Now at the "low end" of obese.

-Can't eat much bread. Gives me SEVERE heartburn/acid reflux. Sometimes feels like my esophegus is burning off.

-Suffered from 3 seperate long episodes of a skin rash when I was younger. Very itchy "pimple like" on legs, knees, hands. Doc thought I was allergic to flee bites so we got rid of cat. Rash came back several years later. Haven't had it in a long time.

-ADD like symptoms. Score with high IQ, always told I'm very intelligent, but never been able to make it through school. VERY hard for me to sit and listen to a lecture, plus fatigue sets in.

-Neurological issues- severe blurred vision, when I was 18 I had SEVERE episodes of dizziness where I would stand up and fall down, sometimes black out. Doc thought seizures but EEG normal.

Sorry this is so long. I'm sure I have more to share, but these are my really bad symptoms. I pretty much live with this crap all the time. Sometimes it's better, sometimes worse. I guess I just thought I would always have to live with it, till a friend with celiac said some people in her support group have similar experiences. I'm tired of making up excuses as to why I can't be with friends, have a life, etc. Does this sound like celiac to you? I started gluten-free diet right away, because that's how desperate I am. Insurance is all messed up right now, but would be willing to do Enterolab. Is it worth it/accurate? Help!

Thanks,

JOCELYN

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Jocelyn357 Rookie
Jocelyn357
Posted
  • Author

Also forgot to mention gas and ALWAYS bloated.....YUCK!

Guest kmmolina
Guest kmmolina
Posted

Hi Jocelyn...also glad you found this board. It has been a world of help to me and as I read through all the threads...it looks as if it has been helpful to everyone else. I'm not a medical professional but if it were me I would ask to have the blood work for Celiac done to see if you have the antibodies. Just in case you have not already read this...don't go off gluten until after the tests are done; that could give you a false reading. Good luck...Kathleen

SueC Explorer
SueC
Posted

Hi Jocelyn,

Welcome!

Yep..... ALL your symptoms sound like celiac disease!! :( If nothing else your skin rash is concerning. It sounds like DH but of course can't be sure without a biopsy. I had DH for years while doc after doc told me it was exzema........

If you don't have the money for testing try the diet. If it works and makes you feel better that's all you need. If you do decide to do Enterolab make sure you go back to eating gluten!!!

Good Luck!

KaitiUSA Enthusiast
KaitiUSA
Posted

I hear great things about Enterolabs.

Obviously since you are gluten free testing should not be done because you need to be on gluten for that.

How long have you been gluten free? Any improvements?

I think it sounds like a possibility of celiac

Jocelyn357 Rookie
Jocelyn357
Posted
  • Author

Thanks for the quick responses! I have only been gluten free for 4 days. Just in the 4 days, I've had no gas problems or acid reflux which is amazing. We are in ministry and I don't have the money to pay for Doctor stuff, but may be able to swing enterolab work. BTW, my rash was not much like ecsema, but more like bug bites all over. But they happened multiple times over years. 2nd day on gluten-free diet, I had a bit of a stomach ache and diarrhea. 3rd day, had another BM, no pain. 2 days in a row BM? Amazing.

SueC Explorer
SueC
Posted

A positive dietary response is a big indicator for celiac. I say keep on with the diet but if you want a positive diagnosis via Enterolab you need to be back on gluten for a couple of months.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Rachel--24 Collaborator
Rachel--24
Posted

Jocelyn,

I just got my Enterolab results only 2 days ago and I can tell you it was worth every penny. I've had so many tests done over the past 2 1/2 years with everything coming back normal yet my whole world was falling part. I did figure out in the last year that something in my diet was making me sick...just didn't know exactly what until now. The Enterolab was the first test to come back positive. I did get dramatically better after taking gluten out of my diet but just wasnt aware of all the places where gluten can hide so I continued to get sick. I feel very bad for you since you've been feeling this way all your life. I've only been sick for 2 1/2 years so I can't imagine all you've gone through. I do know how it feels to not be able to hang out with friends because of feeling too exhausted and depressed. I could never make plans anymore because I would always end up breaking them anyways and after awhile people just don't ask anymore. I couldn't understand why I couldn't even eat a meal or drink a beer without feeling totally spaced out and sick. I also had severe blurred vision and dry eyes...went to the eye specialist several times but like everything else they couldnt find anything wrong. I'm sure now that gluten was/is the cause of most if not all of my symptoms. I was also probably borderline suicidal a few moths back when I was eating normally. I was miserable EVERY day but when I changed my diet the depression was completely gone in only a few days...it was a very dramatic change back to my happy self. I know my physical symptoms will take longer to go away but they are much much better than when I couldnt even get out of bed. I felt like I lost my mind before I stopped eating gluten...I couldn't focus on anything and I had trouble with my memory. I was in a daze all the time and even though all my life I was a quick learner I all of a sudden couldn't seem to grasp anything. Thankfully, I dont have these problems anymore. I hope you experience the same results from taking gluten out of your diet...remember to check the unexpected places like lotions and stuff like that. Those are the things that were making me sick when I thought I was gluten-free. I do highly recommend Enterolab but if you don't want to spend the $$ just yet...see how the diet works first. You don't have to be eating gluten to do the test so there is no rush. Hope you feel better soon :)

Smaddenil Newbie
Smaddenil
Posted

Well, at first I was diagnosed with Irritable Bowel Syndrome and my GYN said to take a stool softener every day. At first, I didn't but later I did. Now I never miss the stoof softener. I realize a lot of people here have diahrhea (sp!) but I am usually constipated with bouts of the other. My doctor said to try a gluten free diet or get the tests, but they are not pleasant so keep to the gluten-free. I am intending to go with the Specific Carbohydrate Diet after our trip the next two weeks, but I will still stay gluten free. I don't want to spend a trip to Europe writhing on the bed! Stay happy! There are such worse things to happen!

Suzanne

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. hjayne19
      - hjayne19 replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Insomnia help

      Hi @cristiana Thank you so much for your reply. This is so helpful. I definitely suffer from anxiety mostly related to health. Brain fog definelty doesn’t help this when it comes. I find my 4 am wake ups are potentially more food related if that’s a possibility (eating enough carbs with protein and fats) and if I eat a small snack before bed to ...
    2. cristiana
      - cristiana replied to hjayne19's topic in Traveling with Celiac Disease
      1

      Mallorca Guide

      Hi Jayne Great choice for a gluten-free cycling holiday, I know the island well. The words you need to look for are 'sin gluten' when you are out and about. I think you will be amazed at how many packets and canned goods are clearly labelled 'sin gluten' in the supermarkets - many more than one sees here - often in quite large type. There seems...
    3. trents
      - trents replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Insomnia help

      One thing to keep in mind is that it's pretty safe to take a B-complex since B vitamins are water soluble. You just pee out any excess.
    4. cristiana
      - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Insomnia help

      Hi @hjayne19 It sounds as if your insomnia is closely linked to your anxiety. I had awful anxiety at diagnosis, and that feeling of doom that you describe. My other symptoms were racing thoughts, and a tangible sensation of a weight bearing down on my shoulders, even if I was feeling perfectly well and happy - it would just hit me. I then got a phobia...
    5. hjayne19
      - hjayne19 replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Insomnia help

      Hi @trents thanks so much for the insights this helps alot. These were my metrics at celiac diagnosis. In which my diet has since changed over the past 3 months Magnesium: 0.80 mmol/L Vitamin B12: 1021 Vitamin D (25-OH): 102.8 I would say I do get tired after eating more carbs and the only thing that really helps me fall asleep...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,938
    • Most Online (within 30 mins)
      7,748
    K2coffee
    Newest Member
    K2coffee
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • hjayne19
      Insomnia help

      By hjayne19 · Posted

      Hi @cristiana   Thank you so much for your reply. This is so helpful. I definitely suffer from anxiety mostly related to health. Brain fog definelty doesn’t help this when it comes. I find my 4 am wake ups are potentially more food related if that’s a possibility (eating enough carbs with protein and fats) and if I eat a small snack before bed to hold throughout the night. I just haven’t been able to help the sudden increase in more days where I can’t fall asleep for hours - it’s those racing thoughts like you describe. I feel like a machine that’s running and can’t shut down.    I will try the epsom salt bath that’s a great suggestion. I think I’m probably working through some other food triggers that may be contributing as well with brain fog.    Anyways sorry to go off. It feels so reassuring finding this community and being able to chat with others. I was definitely feeling a bit crazy until I realized there are many others going through the same thing. 
    • cristiana
      Mallorca Guide

      By cristiana · Posted

      Hi Jayne Great choice for a gluten-free cycling holiday, I know the island well. The words you need to look for are 'sin gluten' when you are out and about.   I think you will be amazed at how many packets and canned goods are clearly labelled 'sin gluten' in the supermarkets - many more than one sees here - often in quite large type.  There seems to be a thought in the UK that if you label something gluten free it will affect flavour etc and will put people off buying it!  However, in the case of Spain, it is almost as if the the Spanish see it as an endorsement of quality and flavour!  There is a supermarket called Mercadona and they label their produce very clearly. Paella should be gluten free so long as the chef use the right stock such as Knorr or a gluten-free homemade stock - you can check.  Most Mallorquins in catering speak English but if not, ask, "Contiene gluten?"  Tumbet is a wonderful dish if you like peppers, tomato, aubergines, garlic and olive oil!  A sort of variation on ratatouille.   Slow roast lamb shank should be safe, and there are endless fish dishes to choose from and salads.  Flan is made with eggs, sugar and caramel, and should be gluten-free.  Lots of gluten-free ice cream and sorbets, they should be clearly labelled. If you want specific restaurant recommendations, feel free to PM me. Cristiana    
    • trents
      Insomnia help

      By trents · Posted

      One thing to keep in mind is that it's pretty safe to take a B-complex since B vitamins are water soluble. You just pee out any excess. 
    • cristiana
      Insomnia help

      By cristiana · Posted

      Hi @hjayne19 It sounds as if your insomnia is closely linked to your anxiety.  I had awful anxiety at diagnosis, and that feeling of doom that you describe.   My other symptoms were racing thoughts, and a tangible sensation of a weight bearing down on my shoulders, even if I was feeling perfectly well and happy - it would just hit me.  I then got a phobia to make things worse, linked to the fact that I had was suffering hypnopompic hallucinations (brief hallucinations on waking).  That was weird but I later learned they aren't all that uncommon, especially with people who suffer from aura migraines.   In fact I felt so unwell that I didn't even recognise it as 'anxiety'.  I remember googling my various symptoms and it was only that that  made me realise I was suffering from anxiety, which was nothing like 'feeling a bit nervous before taking an exam' or , say, making a speech.  This was a whole new ball game. As I came off gluten and healed, the anxiety started to get less and less.  It is not uncommon for coeliacs to have anxiety on diagnosis, so I hope that is reassuring to you.   And deficiencies can make it worse, or cause it, so are definitely worth investigating in further depth if you can.   There is certainly a big difference between 'normal' levels and 'optimum', as @trents says, and this excerpt from a British website and explains how with B12,, for example,  a normal level in one person can represent a deficiency in another: In the UK, normal B12 levels vary slightly by lab but generally, above 200 ng/L is considered sufficient, 100-145 ng/L indicates possible deficiency, and below 100 ng/L suggests likely deficiency, though levels between 146-200 ng/L may still warrant treatment if symptoms are present, as per North Bristol NHS Trust and NICE guidelines In fact, I understand levels are set much higher in other countries, such as Japan.  When I started to supplement B12 with high dose sublinguals I began to feel better, even though at diagnosis my levels were considered 'low normal'.    I too had a lot of muscle twitching which was likely due to deficiencies, but of course if someone has a lot of adrenaline in their system it will only make twitching worse.  I remember reading on this forum one should take magnesium tablets, and it did really help.  As a sportsperson you might like to try throwing a good handful of Epsom salts into a lukewarm bath, and have a soak for 20 mins, as it can be absorbed through the skin.  But be careful as you leave the bath, it can make you woozy! Lastly, to address the anxiety,  I found Dr Steve Llardi's book, albeit on Depression, incredibly helpful.  The Depression Cure: The Six Step Programme to Beat Depression Without Drugs.    Dr Llardi outlines a step-by-step plan for recovery from depression, which focuses on six key lifestyle elements that have largely disappeared in healthy doses from modern life:  physical exercise,  omega-3 fatty acids,  natural sunlight exposure,  restorative sleep,  social connectedness, and meaningful, engaging activity.    The other book (and there is a website) which helped me understand anxiety and recover is Paul David's, At Last a Life, written by a one-time sufferer.  I live in the UK and if I could award a knighthood to anyone in this country, it would be to Paul.  I am so grateful that these books crossed my path.   Anyway, sorry for the length of this post.  I hope something might be of help. Cristiana  
    • hjayne19
      Insomnia help

      By hjayne19 · Posted

      Hi @trents thanks so much for the insights this helps alot.    These were my metrics at celiac diagnosis. In which my diet has since changed over the past 3 months Magnesium: 0.80 mmol/L Vitamin B12: 1021 Vitamin D (25-OH): 102.8 I would say I do get tired after eating more carbs and the only thing that really helps me fall asleep with insomnia is if I eat a banana or a snack. I have a follow up appointment soon so will look into those other B vitamin levels. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.