Any help at all would be amazing, I'm desperate! :)

[Sarah.e.may9602]

Hi,

I am 20yrs old and have had this weird stomach pains on and off for 2 years. They started by just having pains on my left side when I sucked in or pressed on my tummy. In the last 3 months they have gotten really bad, with a lot of bloating and used to occur almost every time just before bed I would get bloated, and feel constipated like I just needed a hole in my stomach to release the pressure. I have had tests for lactose and gluten, and they both came back negative. I was not having any gluten at the time of the test which I have read can affect the results. I had little help from my doctor so I went gluten free which was working really well and I would only have pain once every two weeks. The last three nights were awful, I was in so much pain I struggled to walk, and again they would go away in the morning. I looked like I was pregnant and relief was only through passing wind (sorry for the detail!). I was wondering if anyone has had similar experience, or could point me in a direction to help me. The weird thing is that I did have gluten one day and that didn't seem to affect me at all. Then I will have something like vegemite (I'm from Australia) and this is the only thing that I can think off that would set me off (it contains wheat). So I don't really know what do to or where to go, these stomach pains have been heightened since I had a horrible gastro for a week, and went to hospital. Could it be possible that my gut lining has been damaged? I have become really stuck on what I should do next, as tonight my stomach is fine, I actually feel hungry (previously I have felt super full as a result of being bloated), so I have no idea what triggered that horrible episodes before I went to bed for the last few nights. Any thoughts or suggestions would be amazing, thank heaps

[Abir Mjarkash]

Hello sara 

Im sry for what u r passing through!

I recommend u to get back to a gluten containing diet for a period of time and then repeat the anti endomesial and anti trasglutaminase tests to rule out whether it's celiac disease or not and make an endoscopy to make sure ur intestines aren't damaged

All the best and hope u recover soon

[cyclinglady]

Welcome Sara! 

It sounds like you may not have had the complete celiac blood panel.  It sounds like your doctor is woefully mis-informed!  Why bother testing when you have been gluten free?  Can he not read Dr. Google? (My neighbor is an ER doctor and he consults with a medical version of "Dr. Google" at times because doctors are supposed to know how to research besides cramming all the medical information into their heads.)  

Anyway, you can either get back on gluten and get re-tested (must be on gluten for 8 to 12 weeks) or stay gluten free.   The University of Chicago's celiac website is the most consumer friendly (besides knowing their stuff).  Study this page and the other pages.....

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If you continue to stay gluten free, it's for life.  Read every label.  Research and study up!   There is a steep learning curve.  Our Girl Scout troop studied Australia.  We tired the Vegemite for fun.  But not me.  It contains gluten.  Just reinforcing that you must know for sure if whatever you are eating is gluten free.

Abir gave you some good advice too!  

Take care.  

 

[GFinDC]

Hi Sarah,

I agree with cyclinglady, your doctor doesn't seem to understand celiac disease.   Maybe you can check on Google for a local celiac support group.  Ask them if they know of any good celiac doctors in your area.

The usual testing process for celiac is 12 weeks of eating gluten and then a blood test followed by an endoscopy later.  You are right, if you weren't eating gluten before the test it was not reliable.

Welcome to the forum!  

[boron]

Sarah, if your pain (and tenderness) is mainly in your upper left abdomen, you may have "gas pain" or with a fancy term "splenic flexure syndrome" (splenic flexure is a part of colon that runs near the spleen).

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The pain is caused by a collection of gas in that part of the colon - in people with "sensitive" colon, often diagnosed with irritable bowel syndrome.

The main two triggers of pain seem to be anxiety and certain foods: mainly those that either cause gas or make you constipated. You need to find out which foods or ingredients irritate you personally, for example, foods high in fiber (either soluble or insoluble), dairy, chocolate, soft drink... 

[Stephanie78]

Hello everyone I do not have celiac but I do have an allergy to wheat I have been gluten-free on and off for the past few years,more off than on.. But recently I decided I was tired of the swelling and looking pregnant ! So I am gluten-free again, now here is the tmi part.... I have been gluten-free for about 2 weeks now and today I noticed my stool is pale in color... Right now Google is NOTmy friend and quite frankly scaring the dickens out of me.. Does anyone out there know if this is normal??

[cyclinglady]

33 minutes ago, Stephanie78 said:

Hello everyone I do not have celiac but I do have an allergy to wheat I have been gluten-free on and off for the past few years,more off than on.. But recently I decided I was tired of the swelling and looking pregnant ! So I am gluten-free again, now here is the tmi part.... I have been gluten-free for about 2 weeks now and today I noticed my stool is pale in color... Right now Google is NOTmy friend and quite frankly scaring the dickens out of me.. Does anyone out there know if this is normal??

Frankly, this is a conversation you should be having with your doctor.  I wish you well.  

[Stephanie78]

I don't have insurance and the doctor I have I'm self pay and I can barely afford him and my monthly meds .. I thought I could come on here and see if anyone else has experienced the same thing after switching to gluten-free ..

[Fundog]

Stephanie, do you drink a lot of milk?   During my time working in a daycare center, several of the children had very pale to white stools, from drinking the large quantities of milk the state required the center to serve.

 

[cyclinglady]

15 hours ago, Stephanie78 said:

I don't have insurance and the doctor I have I'm self pay and I can barely afford him and my monthly meds .. I thought I could come on here and see if anyone else has experienced the same thing after switching to gluten-free ..

Any change in your diet can change your bowel habits.  For example, vets will tell you to phase in a new dog food instead of an abrupt change.   Eat too many Oreo cookies and your stool can change color.   Too much broccoli can make you gassy.  

Try to stick with naturally gluten free foods for a while until your body adjusts.  Avoid processed gluten-free foods.  You might be reacting to all the additives and preservatives that can resolve once your gut is healed.