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

Self Diagnosis?

monimoni

Recommended Posts

monimoni Newbie
monimoni
Posted
<_< Hi! My name is Monica. I came across this site last night while doing a google search. All of the symptoms I have seem to point straight to Celiac. For approximately 10 years, off and on, I have been suffering from wicked stomach pains resulting in extreme bloating. Whether I have just eaten or not, my stomach will hurt so bad and swell to the point that it is hard to stand. The pain is usually in between my ribcage at the top of my stomach, and sometimes throughout making it hard to locate the pain. I do not eat any "meat" (red meat, pork, or any type of poultry) and haven't for 8 1/2 years. I try to get my protein from other sources such as certain seafood, seitan, shakes, etc. I love to cook and overall would consider myself a healthy, well-balanced eater. I have tried to cleanse my body through detoxing on raw fruits and vegetables, alternating with days of water/all natural juice fasts. I notice no stomach pain during times like this, still there are other areas of discomfort. Plain and simple....I always wake up tired no matter well I've slept, I get headaches more often than normal, my legs feel very tired, and without sounding vain...I CANNOT STAND THE DARK CIRCLES under my eyes!! I have no health insurance as of now, so I cannot get immediate answers. I have seen a doctor recently through CAMCARE (healthcare provided in South Jersey for low income) but felt as if I gave more information that he did. He said because I've had no problem maintaining my weight, most likely it's not Celiac. I don't know what to think and I am tired of feeling bad and sounding like an old woman. I'm only 27, oozing with positivity and have loads of energy inside. What is my problem?! My next plan of action is to try a gluten-free diet. Can anyone relate?
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


tom Contributor
tom
Posted
He said because I've had no problem maintaining my weight, most likely it's not Celiac.

Another misinformed Dr :angry:

Jestgar Rising Star
Jestgar
Posted
I always wake up tired no matter well I've slept, I get headaches more often than normal, my legs feel very tired, and without sounding vain...I CANNOT STAND THE DARK CIRCLES under my eyes!!

You may also be anemic...

elye Community Regular
elye
Posted

You've got nothing to lose by trying the gluten-free diet - - fortunately, you don't need a doc's permission. If you think you may get tested, however, you need to be eating gluten or you could yield a false negative. In the end, however, the only truly accurate diagnostic tool is dietary response. False negatives happen with the blood panel and the biopsy.

Your symptoms certainly are indicative of a gluten problem. If I were you, I'd give the diet a try...and be sure that you are COMPLETELY gluten-free, as symptoms will stay with even tiny amounts of gluten. This site has fantastic articles and lists of offending foods and surprising sources of gluten that you should check out.

Welcome! You've come to the right place. :)

slmprofesseur Apprentice
slmprofesseur
Posted

Hi Monica,

I'm 31 and have had that pain since the birth of my second child. I went gluten/wheat free after my 10 month old baby was diagnosed with a wheat allergy. I feel great! I wasn't so tired/cranky. My asthma went away! My PCP implied that it was in my head. It's not, the first time I had the intense pain (by the way, morphine doesn't even touch it...) I ate raisin bran. It was definitely wheat, as I accidentally ate some roasted nuts with wheat and ended up in the ER again.

Good luck! In the end you're the best doctor for yourself!

MELINE Enthusiast
MELINE
Posted
My PCP implied that it was in my head.

I wish I could not hear this phrase again..........

Monica welcome. I completely agree with the answers the others gave you. Just go on and follow that gluten-free diet (unless there is a chance that you get tested, so then you will have to wait until the test is done). Have you checked the possibility of IBS?

MELINE Enthusiast
MELINE
Posted
He said because I've had no problem maintaining my weight, most likely it's not Celiac.

"What are the symptoms of Gluten intolerance and Celiac Disease? Many people suffer from headaches, mouth ulcers, weight gain or weight loss, poor immunity to disease, and skin problems like dermatitis and eczema.

But the common and well-known Gluten intolerance symptoms are gastro-intestinal (diarrhoea, flatulence, bloating etc.).

Also associated are miscarriage and infertility and malabsorption problems like anaemia. "

show that to your doctor......Don't be afraid to change doctor if you feel he is misinformed. Most of us had to pay many visits until we found the right one (If we were lucky to find him....)

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

Celiac.com Sponsor (A8-M):


elye Community Regular
elye
Posted
Have you checked the possibility of IBS?

IBS is a symptom, nothing else. We like to say that it really stands for "I Be Stumped", as doctors throw it out when they're not sure about what's really going on. Syndromes are simply a collection of symptoms, the cause of which remains questionable or unknown.

I cannot believe the number of people who are told that they have IBS, been pushed onto some expensive drugs to "help with" the symptoms, continue to suffer with gastrointestinal problems, and then try the gluten-free diet on their own, only to find it completely alleviates their "irritable" bowel.....

Crazy, I tell ya!

monimoni Newbie
monimoni
Posted
  • Author

I would just like to thank everyone who responded to my post. All of your input is greatly appreciated. I feel more at ease just to discuss my problem with people that understand. You start to feel like a broken record or like you're just complaining all the time. I am not imagining this pain nor am I a hypchondriac. Thank you so much for your words. I am glad to be a part of this forum and will continue to post my hopeful progress.

p.s. does anyone live in the philly/south jersey area?

elye Community Regular
elye
Posted
p.s. does anyone live in the philly/south jersey area?

Oh, yeah....... :)

Patti? Judy?

gfp Enthusiast
gfp
Posted
IBS is a symptom, nothing else. We like to say that it really stands for "I Be Stumped", as doctors throw it out when they're not sure about what's really going on. Syndromes are simply a collection of symptoms, the cause of which remains questionable or unknown.

I cannot believe the number of people who are told that they have IBS, been pushed onto some expensive drugs to "help with" the symptoms, continue to suffer with gastrointestinal problems, and then try the gluten-free diet on their own, only to find it completely alleviates their "irritable" bowel.....

Crazy, I tell ya!

Couldn't agree more .... the 'diagnosis' of IBS probably leaves more people in misery and declining health than any other medical fad.

Can't explain it, don't know what causes it ... but here have a diagnosis and go away...

I'm sure the gluten-free diet helps many but equally there are probably lots of other causes wil never be found because the Dr's hand out pills to 'help alleviate' etc.

Meanwhile for the celaics ... still having problems on your gluten-free diet? Not eating bread but still have problems... must be IBS...

Lets forget about CC and hidden gluten...that would involve the Dr's having to think instead of reading drug co handouts... so the poor celiac gets told they are doing everything OK (when they are not) and given meds.

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. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Ferritin levels. And see what your hemoglobin looks like too, that will tell you if you are anemic? You can have 'low normal' levels that will not be flagged by blood tests. I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial...
    2. Mari
      - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here

      Hi Katht - I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was...
    3. Colleen H
      - Colleen H replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Yes thyroid was tested.. negative Iron ...I'm. Not sure ... Would that fall under red blood count? If so I was ok Thank you for the detailed response..☺️
    4. Colleen H
      - Colleen H posted a topic in Coping with Celiac Disease
      0

      Methylprednisone treatment for inflammation?

      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines? Did it work ?? Thank you !!
    5. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse. But it is important not to stop the treatment. Regarding your problems with anxiety, again that is another symptom of a B12 deficiency. I didn't know...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,879
    • Most Online (within 30 mins)
      7,748
    Peta Dunn
    Newest Member
    Peta Dunn
    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

    • cristiana
      Ibuprofen

      By cristiana · Posted

      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      New here

      By Mari · Posted

      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
      Ibuprofen

      By Colleen H · Posted

      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
    • Colleen H
      Methylprednisone treatment for inflammation?

      By Colleen H · Posted

      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines?  Did it work ??  Thank you !! 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
×
×
  • 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.