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Self Diagnosis?


monimoni

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monimoni Newbie
<_< 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?

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

Another misinformed Dr :angry:

Jestgar Rising Star
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

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

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
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
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....)


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elye Community Regular
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

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

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

Patti? Judy?

gfp Enthusiast
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.

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    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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