Frustration, confusion

[SadAndSick]

Hello everyone ?, I have been lurking on this forum for a long time now, and decided to create my own account and post. I am currently pre-diagnosis stage, still waiting before I see a doc. I am 21 years old and have had GI issues for years.

When I was a kid I had intussusception on my intestines and had surgery. After this my life was pretty much not alarming, except for a *very loud* belly at all times (which was very embarrassing always at school, or other). It always sounded like there was a party in there! And gradually I became constipated, but never knew it was abnormal. I just went to the bathroom once in 3-5 days on average, never knew anyone was different. And then as a teen the constipation turned into me passing VERY large stools irregularly, it was painful and uncomfortable, something my mother had. But I didn’t think much of it...

Recently, however, I noticed other symptoms. I don’t have a regular menstruation cycle after years, despite endocrine tests being OK. I have skin problems (acne, inflammation). The constipation turned into me also passing some kind of clear liquid/mucus, and I started having hemorrhoid as well (yum). I had an overall sense that something was off. On last blood work I had low white cells and platelets (but very good iron, strangely), nobody could really identify the reason for all those symptoms.

Then I did some research and went on a gluten-free diet to see if it impacted me in any way. Nothin to lose, I thought, and turned out it was an epic win: my constipation stopped, for the first time in my life I can now go EVERY DAY. It changed my life. No more stomach noise, no more issues. In that short time frame even my cycle regularized. I found I was also reacting to dairy, which would give me diarrhea. And with it went away my skin issues, too! When I tried introducing it again, I became gassy, had sticky or floating stools, or back on the constipation wagon.

However I do know if I want a test for celiac I need to start eating it again. Currently I am weighing the pros/cons of a diagnosis. I know that gluten-free is the lifestyle I need to feel healthy, however I am worried about going back on gluten for months for testing, given the severity of my GI symptoms (last time, saw bloody mucus — hell naw).

It also costs a lot of money and requires me to take time off work, which is hard at my job. I am not sure if I really feel the need to, insofar as the diet for me was enough proof I shouldn’t be putting it in my body - but I worry in case I have celiac, if I should be aware given it’s possible associations with other conditions, and malabsorption issues it gives for minerals and vitamins, etc. Still considering things for now.

Thanks so much for reading this ?????

[GFinDC]

Hi Sad,

Welcome to the forum !

Lots of people don't get diagnosed.  Often its for the same reason, they have gone gluten-free before testing.  While it's nice to "know" you have celiac disease by medical standards, it doesn't outweigh what your body says.  If gluten makes you sick, don't eat it!

There are plenty of people with NCGS who don't test positive for gluten antibodies, but still have problems from eating it.  Celiac testing is not perfect, and there are false negatives and rarely false positives possible.

You don't need to have a celiac diagnosis to get your vitamin and mineral levels tested.   Some of the ones celiacs are sometimes low on are B-vitamins, vitamin D, and iron.

https://www.celiac.com/celiac-disease/celiac-disease-diagnosis-testing-amp-treatment/vitamin-deficiencies-and-celiac-disease-r3138/

There is a gene test for possible celiac.  It doesn't mean you'll automatically have celiac, but that you are capable of developing it.

[RMJ]

 How long have you been gluten free? If not too long you could have the blood tests for celiac. In some people it can take a while for the antibodies to come down to normal ranges.  If positive it would indicate celiac. However if they came out negative you wouldn’t know anything - it might be recovered celiac or never celiac. Also, if negative, some stupid doctors would never believe that you have a problem with gluten. 

[SadAndSick]

Thanks for much for chiming in guys. I will be seeing a Dr. tomorrow to ask for blood tests first. I think I'm reacting to small amounts of gluten I realized were present in some of my seasoning blends ("traces of..." mentioned on their website but not the packaging -- ugh). I was wondering where suddenly my diarrhea + breakouts & skin inflammation came from. I guess I'll have to start eating it again for some weeks prior, and that sucks. Just now I ate a regular gluten sandwich today in preparation and I'm dealing with the gas, how embarrassing. Just tired now.

[Ennis-TX]

I had the constipation issue....since I was a little kid days at first, in high school it was often almost or more then a week. Seems it was linked to magnesium absorption issues. If your having issues with C try Natural Vitality Calm, I suggest using a scale as it measures very odd. Start at 2grams and up it another 2 grams each day til you get loose stools then lower it.

The bloody stool and mucus triggered by gluten is also inline with Ulcerative Colitis...I got it later, I sort of blamed celiac for it, seems they are both genetic and to the same genes I later learned. UC can flare to other foods not just gluten, Dairy, Soy, Spices, and in some people coffee, chocolate (thank god I do not have these), and in rare cases like mine it flares to sugar .
See about getting both scopes with one prep and one sedation when you get checked to see about the large intestines and if something there along with the endoscope and biopsy for celiac.

Both issues require a gluten free diet, UC can sometimes require other things for treatment like medications or supplements along finding your personal triggers.