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

Do You Think I Am Celiac?


Sparkle1988

Recommended Posts

Sparkle1988 Rookie

Hi everyone am new!

My symptoms started a few years back and they have just gradually got worse - feel like rubbish everyday now. Here are my symptoms:

Diarrhea

Constipation

Bloating

Stomach cramps

Indigestion

Gas

Heartburn

Joint pains

Fatigue

Muscle cramps

Headache

Feeling lightheaded

Lack of concentration

Anaemia - low iron and b12

I had a blood test for celiac which came back negative. I'm now waiting on a biopsy appointment. What do you all think?

Thanks


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



Celiac.com Sponsor (A8-M):



MySuicidalTurtle Enthusiast

There are loads of symptoms for Celiac disease and those are some of them. Have you tried not eating gluten?

Sparkle1988 Rookie
There are loads of symptoms for Celiac disease and those are some of them. Have you tried not eating gluten?

A couple of symptoms I forgot to put on my first post are: breathlessness (tightening feeling in throat and chest), swollen gland in my neck which has been there for over 2yrs (the doctors dont know why its been there so long as apparantly its just an indication that I am 'run down'), I also have itchy skin which really annoys me - especially at night.

I have been going to the doctors with those symptoms for around a year and they told me I have IBS. All of the tablets they gave me for IBS have not helped me. I dont know what everyone else thinks, but I think IBS is just something you are told you have if the docs dont actually know why you are feeling that way.

I've never cut gluten out before but the doc says to keep eating it the now as I have a biopsy coming up in the next couple of months.

By the way, how common are negative blood tests in people with celiac? I'm not sure exactly what tests I had for celiac but as I said before, they came back negative.

Thanks for your help.

QueenOfPain Rookie

Yes, I agree that doctors throw out an IBS diagnosis everytime they're stumped. It sounds like gluten could be the culprit for you. Definitely keep eating gluten if you're going to have the endoscopy. It is possible to have a false negative on the blood test. It is also possible to have a false negative biopsy. (Which is what happened in my case.)

I would suggest that if your biopsy comes back negative, and your doctor can't come up with any other explanation for what is troubling you... just try the gluten-free diet. It was hard at first, especially since I went through the withdrawal (my GI symptoms actually got worse). But about 3 months later I started feeling so much better. My blood tests had been coming back postive and after going gluten-free it came back negative. I'm so glad I stuck with my "gut" instinct and ignored my doctor in the beginning.

Sparkle1988 Rookie
Yes, I agree that doctors throw out an IBS diagnosis everytime they're stumped. It sounds like gluten could be the culprit for you. Definitely keep eating gluten if you're going to have the endoscopy. It is possible to have a false negative on the blood test. It is also possible to have a false negative biopsy. (Which is what happened in my case.)

I would suggest that if your biopsy comes back negative, and your doctor can't come up with any other explanation for what is troubling you... just try the gluten-free diet. It was hard at first, especially since I went through the withdrawal (my GI symptoms actually got worse). But about 3 months later I started feeling so much better. My blood tests had been coming back postive and after going gluten-free it came back negative. I'm so glad I stuck with my "gut" instinct and ignored my doctor in the beginning.

Hi

I will wait for my biopsy, then maybe try the gluten free diet maybe even before I get my test results back. I was wondering, if you are one that has symptoms of diarrhea usually once or twice a day and also regular constipation, is it normal to have some days or weeks where you don't get diarrhea and sometimes dont get constipation? I have had constipation a few times in the last week but no diarrhea at all which is great! All my other symptoms have stuck during this time though.

I'm just clueless as to whether it could be Celiac or not. Is it possible to have it when no-one in my family (as far as I know) has been diagnosed with Celiac? There are a couple of people in my family who have 'IBS' but have had negative blood tests for celiac (they haven't had biopsies).

Thanks

QueenOfPain Rookie

As for the symptoms--I didn't experience a lot of constipation (except for in the beginning when I was a kid.) As for the diarrhea, it would come and go. I might have a good week and then have a bad week or a bad month. I wouldn't usually have diarrhea every single day, but when I did it was bad. I might have to run to the bathroom four or five times. =(

And yes, it is possible for you to have it even though no one else in your family has been diagnosed. My dad told me that there have been many people on his side of the family that have had gastrointestinal problems, but no one has ever mentioned Celiac. In fact, his sister has been diagnosed with IBS. (But I suspect she might really have Celiac.)

If you do decide to try out the gluten-free diet keep in mind that some people go through withdrawals in the beginning. My gastro symptoms actually got worse after I began. It took 3 months for me to feel better. Best of luck to you! Hang in there!

Sparkle1988 Rookie

Well I suffer both diarrhea and constipation (mainly diarrhea), but ive had a good couple of weeks as ive had no diarrhea and only constipation a few times. Most of the time diarrhea does bother me but like you were saying, I get good weeks where I don't get it at all.

My aunt has the exact same symptoms as me (minus the diarrhea), so I think she is going for the biopsy at some point as well. I can't wait to get mine done, just want to know! It would be great to be able to go out for meals and nights/days out and not worry about how ill I might feel.

Also, what exactly happens during the biopsy? Is the anesthetic an injection? I hate injections so I'm a bit worried about that, but I don't want to have just the throat spray on it own.

Thanks


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



Celiac.com Sponsor (A8-M):



QueenOfPain Rookie

They performed an endoscopy and a colonoscopy at the same time with me--so they had me knocked out for the whole procedure. I want to say they had me hooked up to an IV and maybe they delivered the anesthesia through the same line... I can't remember--it was a year ago. It wasn't too bad. And after they were finished I was just kind of groggy and tired the rest of the day--no biggie.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,855
    • Most Online (within 30 mins)
      7,748

    Tara M
    Newest Member
    Tara M
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
    • Jillian83
      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
×
×
  • 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.