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Some Questions I Have?

4 posts in this topic

I'm new here and looking for advice on whether or not my symptoms sound like Celiac or a gluten intolerance.

To start with I've had stomach issues my entire life. I've always had cramps, bloating, gas and gas cramps that were intermittent. I never went to the doctors to find the cause of it so I just lived with it. I've always had anxiety and would get terrible stomach aches when ever I was nervous. I've always been skinny and no matter how much I eat I've never been able to gain weight.

Starting in June things seemed to get worse. Five times since June I'll be eating and I'll have to run to the bathroom because I'll get cramps and diarrhea. The last time it happened I was eating Spaghetti. Since June I've had these symptoms which haven't gone away;

- Gas (almost every night, which doesn't always get released)

- Bloating (don't know if it's really considered bloating but gas just seems to move around in my stomach/intestines and doesn't get released)

- Gurgling Stomach/Intestines

- Pain on left side

- Ribbon stools (intermittent)

- Twitching on left side (ribbon stools follow when this happens)

- Diarrhea (intermittent)

- Hair Loss

- Weight Loss (I'm down from 135 lbs to about 118 lbs since June for no reason)

My doctor wanted to test me for Celiac but I told him I had done a gluten free diet for 2 months and it didn't help. At the time I was still eating gluten but wasn't aware of it (theres gluten in more things then I realized). I stopped eating gluten 2 days ago the gas hasn't been as bad. I have a doctors appointment on March 2 so I was wondering if I should ask to be tested? and if I do, will I still have to eat gluten until I'm tested?

One last question, if I get tested and my tests come back positive and I go on a gluten free diet, how long until the gas, gurgling, diarrhea and ribbon stools go away?


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I think you should get tested.I had many of the symptoms you have and was diagnosed Celiac.As far as the gas,bloating,and gurgling go I am six months gluten free it is better but not completely gone.Everyone heals at different rates I am still waiting.Follow your DR. advice and get tested.Good luck.


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If you want accurate testing, you'll need to continue eating gluten until you get the tests done.


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Thanks for the help, I'm definitely going to ask to be tested. So is hair loss, ribbon stools, occasional abdominal twitching and left sided abdominal pain associated with celiac? I was reading a few sites and didn't see those symptoms listed. The main symptoms listed weren't very helpful, they really only listed gas, bloating and diarrhea as common GI symptoms.


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    • Going private no problem with getting the tests now, adds financial pain to the physical pain but better than 6 month waiting list on the national health service. Just feels like a lot of pain and aggravation to tell me what I already know deep down. Feels like my whole future has been taken away with this and I have a feeling I haven't even seen the half of it yet. Doctor seems to be very relaxed on the concept of needing to worry about cross reactivity, gluten paranoia when eating out etc. yet it seems to be the case for most on there that that's exactly how it is for so many people. Someone tell me I'm wrong... or is that really what life becomes in the cold harsh reality of things?
    • It took me years to be diagnosed.  I've been misdiagnosed with several different things and knew that there was more to it.  I requested to have an egd to test for Celiac's two years ago, my doctor never called me back so I went low gluten from then on.  I still felt like hell because I didn't realize that "everything" has gluten in it....  My daughter became ill back in March.  I went to several different doctors trying to figure out what was causing her to be ill.  Our family doctor said she had gallstones, wanted to immediately do surgery on her.  I refused since she didn't fit the typical signs of a child with gallstones.  I requested a pediatric surgeon and then a pediatric gi dr.  The surgeon was smart enough to say maybe ask the gi dr to test for celiac disease....  Then it clicked.  I was so angry and mad at myself and my dr for not listening to my body for the past several years. Her blood test was negative, but the biopsy was positive.  She went on the gluten free diet.  I then said I wanted to be formally tested.  Blood test was negative, biopsy was positive and they ran the genetic screening.  I am a DQ2 homozygous, cat 8.  My doctor apologized to me over and over.   I have two sons that were tested for their genes, one is a cat 4 and one is a cat 2.  If they start showing signs of the disease they will be tested by way of egd.  Their pediatric gi said that I probably would've died by 40 if I was left undiagnosed.   So in saying all of that, fight for your test.  Listen to your body, but don't stop living.  Use this as a teaching tool.  Help others that don't understand the disease.  It'll be tough but you can do it...
    • Hi, thanks... Yes, I was diagnosed with glucose intolerance by an endocrinologist. That's when I started cutting back on sugar. Other than some deficits (chromium, testosterone, D + B-12) they found nothing. Except that I also have mild ostopenia, and I often get kidney stones which is strange but they told me not to worry about it and to get more exercise etc. Which is exactly what I've been doing. I can tell you, banning gluten and sugar from my diet is the best thing I've ever done in terms of diet. The pounds came right off. But don't worry, I'm not a walking skeleton yet, lol. Fortunately the weight loss is a result of my diet, I had problems losing weight before the diet and even when exercising. But it all makes sense now. I easily store carbs as fat and have a hard time losing them. I still have the intolerances though... I had a high white blood cell count but they thought nothing of it. It all points to inflammation in my gut somewhere. But hey they're the doctors if they tell me not to worry about it I'll just have to try and figure it out on my own I guess. Meanwhile I'm really happy to see the belly blubber disappear.  Cheers
    • Also, I know that the DQ2 is the most common one representing celiac disease.   I have low IgA-35 and my DGP Igg - 34.8 (medium to strong positive is greater than 30) All the IgA labs were within range. I have Hashimoto's as well. My vitamin D level is 23. I guess I'm wondering how likely it is that I have celiac disease.  The genes I have are not the worst ones to have, I believe, and while my DGP Igg is high it's not crazy high.  I'm still awaiting a call back from the GI as the PA told me to go gluten free for two weeks and then reintroduce it (this was last week while the GI was out of the office).  I guess I'm wondering what the point of that really is... Thanks again everyone for your help and advice as I navigate this...
    • Do you have any diagnosis from a doctor?  Weight loss like you are describing could signal a serious issue that you shouldn't be messing around with.
      You shouldn't be cutting out all of those foods without going to a doctor to figure out what is going on.
      A doctor would be doing testing to make sure nothing serious is going on.
      I'm the first person to say I haven't found a good doctor and I'm suffering with serious pain and issues because of that so I am altering my diet, but I'm following up with the doctor.  So if you haven't schedule an appointment with a GI doctor or some doctor.
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