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Rookie Trying To Cope.. Think Gluten's The Culprit..

LundqvistSaves

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LundqvistSaves Rookie
LundqvistSaves
Posted

Hello everyone,

Please forgive me if this isn't the proper place to post, but I'm a 26 y/o male and I've been sick for the past year with no help from three different gastroenterologists. I think it might be gluten, but my test came back negative for celiac's, so perhaps just an intolerance? My main symptoms are a lot of gas, GERD, overall crappiness, fatigue, lack of sex drive, depression, and mostly a cramping pain in my upper stomach right below my ribs. This seems to be the most prevalent, along with a crazy bloating. I've been taking Nexium which has helped with heartburn, but that's about it. I also started taking this probiotic called VSL#3. It's really strong, take a look at it if you aren't familiar. I can't tell much yet from it since it's only been a week. I've also been unresponsive to any IBS meds my doctors have tried on me, so that leads me to think maybe it is gluten causing the trouble.

I went gluten-free back in October for about a month, but I couldn't tell if I was feeling any different. Unbeknownst to me, I was also consuming potatoes/french fries once a week unaware that they could contain gluten, as well. So, I'm really not sure what else to do. I've decided to go gluten-free again, and started about 4 days ago.

I'm looking to feeling better and I hope going gluten-free helps. It's put a lot of strain on my relationship. Some days I just don't know what to do anymore. I miss having fun with friends, feeling well enough to work out, and just feeling good about myself. I've also gained 20 pounds. Has anyone else had any similar situations? I hope maybe I can get better within a month..

Thanks a lot, everyone.

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tom Contributor
tom
Posted

Plenty of similar situations around here.

Were the tests last yr blood tests? If you have the lab results, post them.

If you don't have them, get them. They belong to you.

Sucks that the prev gluten-free trial might've been shanghaid by the french fries.

Takes a lot of effort at first to be certain everything's gluten-free.

Sometimes it's best overall to eat as simply as possible for a while even if it IS boring. No variables like "is their seasoning gluten-free" or "do they REALLY never fry anything else in the french fry station, even when the bus of kids order 22 10-pc chkn nuggets?"

Imho it'd be good to also try dairy-free & soy-free for a few wks at first - might as well find out now & it almost cancels the possibility of the all-too-common "I've been gluten-free for x weeks & still feel crappy too often & am thinking maybe it's dairy or soy also" lament.

Hope you get it figured out.

Day 5 going good?

birdie22 Enthusiast
birdie22
Posted

I had many similar symptoms...bloating, pain below ribs that was so bad I couldn't stand having my kids sit on my lap and lean back on my stomach, heartburn, fatigue, (and more!). I too am blood test negative. I have been gluten-free now for 6mos. I think it took a solid 4 mos before I could really see the difference. At 5 mos I added gluten back in for 7 days and the symptoms came rushing back. That was enough for me and my doc to confirm at least NCGS.

My biggest advice is to really stick with the gluten-free diet for several months. You may have doubts during that time if you are on the right track, I know I did. It just takes time for the symptoms to lessen.

LundqvistSaves Rookie
LundqvistSaves
Posted
  • Author

Thank you Tom and Birdie for posting your thoughts. It gets so hard trying to talk to family or my girlfriend about this anymore. Sometimes I just need to complain/vent because it's in my head all day, everyday, and I need to get it out but they don't understand. I feel like I'm going crazy. I've worked so hard and landed the job of my dreams and now I'm in pain everyday. I can't believe it will be a year next month with this. I feel so hopeless. I just lay in bed all day after work and all weekend because my stomach always hurts.

I am trying to be strict with gluten free. I don't mind it - I just want it to work. Unfortunately, I felt much worse today than I did over the weekend.

Tom, I've also been dairy free with the exception of a slice of organic provolone cheese, but I know cheese is usually pretty low in lactose. As for soy, I haven't had much soy as far as I know, I typically don't like soy products.

Another one of my symptoms is really strange. Since December, every few weeks I get these red bumps. It's usually one or two at a time, and they look exactly like mosquito bites or a spider bite. I know it can't be because I've washed my bedding and curtains, swept, dusted, and still I get one or two every other week. We know it can't be a bug bite, because my girlfriend sleeps in the same bed with me and she never gets it. It's not a rash or anything like that. I am so lost. Any chance anyone has had something similar?

Again, thank you guys for listening and responding.

LundqvistSaves Rookie
LundqvistSaves
Posted
  • Author

I had many similar symptoms...bloating, pain below ribs that was so bad I couldn't stand having my kids sit on my lap and lean back on my stomach, heartburn, fatigue, (and more!). I too am blood test negative. I have been gluten-free now for 6mos. I think it took a solid 4 mos before I could really see the difference. At 5 mos I added gluten back in for 7 days and the symptoms came rushing back. That was enough for me and my doc to confirm at least NCGS.

My biggest advice is to really stick with the gluten-free diet for several months. You may have doubts during that time if you are on the right track, I know I did. It just takes time for the symptoms to lessen.

Hi Birdie, thanks for responding, I really appreciate it so much. I'm sorry, but what does NCGS stand for? Some kind of gluten sensitivity? Also, after 4 months you said you felt better. Were your symptoms almost fully gone, and you felt back to normal? Or did it just hurt less.. and you never fully feel well, so you just "manage" it.. ?

Thanks again.

tom Contributor
tom
Posted

...

Tom, I've also been dairy free with the exception of a slice of organic provolone cheese, but I know cheese is usually pretty low in lactose. As for soy, I haven't had much soy as far as I know, I typically don't like soy products.

...

Sometimes the issue w/ milk can be the milk protein, casein, instead of lactose.

Soy gets snuck into a lot of things w/ longer ingred lists. If things don't get better gluten-free, it's one thing to keep in mind.

birdie22 Enthusiast
birdie22
Posted

Yes, NCGS equals non-celiac gluten sensitivity.

I still have off days. Even 6mos gluten-free and things pop up. Yesterday afternoon my heartburn flared. But, on a whole, I can go days, and yes, weeks, feeling great. Some posters here have said it has taken them 6mos-1yr to feel noticeably better. If gluten is your issue and causing damage it will take time for that to heal. That is why for me it has been important to track my symptoms and their frequency. I know I'm on the right track because I tally my symptoms at the end of each month and I can see that they are lessening month by month. I would say that 4mos out my energy was greatly improved and my headaches (which accompanied the fatigue usually) were much reduced. It has taken longer for the heartburn to improve. The stomach pain was probably the first thing to get better and the bloating slowly decreased over the first month. I can tell when I've been glutened because the bloat and epigastric pain come right back.

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MitziG Enthusiast
MitziG
Posted

I am dx Celiac, which is fortunate because has I just KtreidK the diet, I would have assumed it wasn't helping. Because I was forced to, I stuck with it, but it was not until around 6-7 mos that I noticed I wasn't feeling as lousy anymore. It has just gotten better every month since.

IBS= something is irritating your bowels! Eliminate that "something" and you no longer have IBS. "Something" is usually gluten and casein. Stick it out, you will be glad you did.

LundqvistSaves Rookie
LundqvistSaves
Posted
  • Author

Thanks again, everyone. I have one more question. Sometimes I wake up feeling well, and go through most of the day feeling okay, then at some point during the day, my symptoms will flare up for no reason. Sometimes it seems to happen after a bowel movement.

For example, I'll be fine all day, still continue my gluten-free diet, then maybe have a BM later in the day and suddenly afterwards I might feel sick again - have some heartburn, pain in my upper stomach, or some bloating. Is it normal for symptoms to just turn on, and sometimes off, and on again even if you're eating gluten free? I feel like that would only happen only if I ingested gluten... which I'm sure I haven't.

Just seems strange to me, but I'm hoping this is a common thing. Would love to hear your opinion.

Thanks a lot.

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