How many times did you screw up in the beginning?

[Brogrammer]

So... I recently, and I'll add very abruptly, came down with gluten intolerance. Maybe Celiac, who knows, but right now I mainly care about relieving symptoms... in either case I have been attempting to go gluten free, which for the periods of time I have been able to, has clearly helped.

But anyway, it seems to be a recurring three day timeline of not consuming gluten, beginning to not feel so terrible... and then discovering the hard way that yet another routine food item I consume has gluten. I know the obvious stuff, i.e. bread, beer, pasta... and I've been doing my reading about other things. But here's how it went...

After a routine of bagel breakfasts at coffee shops had me getting these severe aches and cramps in my lower stomach and even inner legs, and on a few separate occasions I urinated some blood after vigorous exercise... a woman suggested I might have developed a gluten intolerance and I should try quitting. So I did, and lo and behold, the terrible symptoms I described above went away. But as many of you I'm sure have experienced, it's really hard to figure out exactly what you can't eat in the early stages... so I've had several relapses.

Staying away from the obvious, less than a week after I resolved to do this, I ate a salmon patty that was breaded and had a reaction, which at least confirmed for me that it was indeed a problem with gluten. So, screw that... no more salmon patties.

Then three days later, I ate a falafel (which the restaurant staff claimed was not made with any wheat products) and had an even worse reaction. Got off gluten again for a few days and just started to feel better, back to what I know as normal lately, around mid day yesterday. So then today I ate an early lunch, a salad, I figured that would be safe... a salad doused in balsamic vinaigrette. And as I type this, here we go again, another reaction.

Interestingly, each reaction has been a somewhat different set of symptoms. The first few were mostly the lower stomach cramping and severe bloating. The next two were bloating and constipation. And this one has been severe diarrhea. Every single one after the first few has also been accompanied by pretty severe lightheadedness, mood swings (I've had trouble with these for a long time, and may have found my cause finally), and dizziness. Also as a young guy, I feel like I have some uniquely dramatic hormonal fluctuations of some sort... after a gluten attack, I feel noticeably weaker in the physical sense, and I tend to be very shy and withdrawn and fatigued.

 

Anyway, I'm so sick of this, it is miserable. Also of course, I've read about the litany of other things this can cause and the word "damage" appearing everywhere... so I'm wondering... how much very up in the early stages is normal? How much is okay? I'm trying my best but this gluten free diet seems so difficult to master after a lifetime of sandwich eating and the like. I just want to know that suffering aside, I have some time to fully figure it out. I sure hope that it's not the case that the moment it becomes necessary to go gluten free, any mishap after that has lasting consequences. Surely it isn't, but I'm nervous and I can definitely say I've never felt sickere

Thank you everyone, in advance, for reading all that and contributing your thoughts.

[kareng]

27 minutes ago, Brogrammer said:

So... I recently, and I'll add very abruptly, came down with gluten intolerance. Maybe Celiac, who knows, but right now I mainly care about relieving symptoms... in either case I have been attempting to go gluten free, which for the periods of time I have been able to, has clearly helped.

But anyway, it seems to be a recurring three day timeline of not consuming gluten, beginning to not feel so terrible... and then discovering the hard way that yet another routine food item I consume has gluten. I know the obvious stuff, i.e. bread, beer, pasta... and I've been doing my reading about other things. But here's how it went...

After a routine of bagel breakfasts at coffee shops had me getting these severe aches and cramps in my lower stomach and even inner legs, and on a few separate occasions I urinated some blood after vigorous exercise... a woman suggested I might have developed a gluten intolerance and I should try quitting. So I did, and lo and behold, the terrible symptoms I described above went away. But as many of you I'm sure have experienced, it's really hard to figure out exactly what you can't eat in the early stages... so I've had several relapses.

Staying away from the obvious, less than a week after I resolved to do this, I ate a salmon patty that was breaded and had a reaction, which at least confirmed for me that it was indeed a problem with gluten. So, screw that... no more salmon patties.

Then three days later, I ate a falafel (which the restaurant staff claimed was not made with any wheat products) and had an even worse reaction. Got off gluten again for a few days and just started to feel better, back to what I know as normal lately, around mid day yesterday. So then today I ate an early lunch, a salad, I figured that would be safe... a salad doused in balsamic vinaigrette. And as I type this, here we go again, another reaction.

Interestingly, each reaction has been a somewhat different set of symptoms. The first few were mostly the lower stomach cramping and severe bloating. The next two were bloating and constipation. And this one has been severe diarrhea. Every single one after the first few has also been accompanied by pretty severe lightheadedness, mood swings (I've had trouble with these for a long time, and may have found my cause finally), and dizziness. Also as a young guy, I feel like I have some uniquely dramatic hormonal fluctuations of some sort... after a gluten attack, I feel noticeably weaker in the physical sense, and I tend to be very shy and withdrawn and fatigued.

 

Anyway, I'm so sick of this, it is miserable. Also of course, I've read about the litany of other things this can cause and the word "damage" appearing everywhere... so I'm wondering... how much very up in the early stages is normal? How much is okay? I'm trying my best but this gluten free diet seems so difficult to master after a lifetime of sandwich eating and the like. I just want to know that suffering aside, I have some time to fully figure it out. I sure hope that it's not the case that the moment it becomes necessary to go gluten free, any mishap after that has lasting consequences. Surely it isn't, but I'm nervous and I can definitely say I've never felt sickere

Thank you everyone, in advance, for reading all that and contributing your thoughts.

Since you seem to be reacting to things that are gluten-free - like balsamic vinegar.  Maybe gluten isn’t the real issue? Go back on a gluten diet and get tested for Celiac, then you will know.  If it’s not Celiac, you could explore a low FODMAP diet- that usually has quicker results than a gluten-free diet for Celiac

[Brogrammer]

6 minutes ago, kareng said:

Since you seem to be reacting to things that are gluten-free - like balsamic vinegar.  Maybe gluten isn’t the real issue? Go back on a gluten diet and get tested for Celiac, then you will know.  If it’s not Celiac, you could explore a low FODMAP diet- that usually has quicker results than a gluten-free diet for Celiac

Thank you for trying to help. Unfortunately, it seems that you did not read my post thoroughly or accurately, and are making a variety of assumptions about what I have and have not done, and which foods were involved in my most concerning reactions. I look forward to any opportunity for further dialogue when you get the chance to reread what I wrote and answer the questions I asked in the title if you choose to do so.

I've heard of low FODMAP, but that's about all... heard of it. Will certainly look into it if there are any substantial and meaningful differences between that and gluten free. The good news is, I was never the type to be particularly attached to bread/grains. It just seems so far that many different things have gluten in them, so it's harder to avoid than would be convenient. 

[kareng]

What I am trying to say is - it is difficult to be as gluten-free as a Celiac needs to be.  So why not find out if that is necessary?  If it’s actually a FODMAP problem, your life will be easier. You don’t even know if you have intestinal damage .  Celiac can take months or years to heal in a strict gluten-free diet.  

[kareng]

To answer your title question - I am sure in the first month or so I or my family messed up 4 or 5 times.  Most of us do not eat out for a few months unless it’s a dedicated gluten-free restaurant or one with exceptional gluten-free practices.  Eating food someone else prepares isn’t really a smart move in the first few months.  You have to learn how to make sure the people cooking the food really knows how to be gluten-free.  And it helps if you know what normal ingredients would be in a fish.

[Feeneyja]

First of all, I am someone who is not celiac diagnosed (tried the gluten challenge but got too sick to do it long enough so the celiac testing is not considered accurate).  My daughter, who is 12 now, is also in the same boat. Not celiac diagnosed but gets incredibly sick with lots of neurological symptoms and now hives if she gets glutened.  In many ways, it would be worth it to know if it actually is celiac, but a gluten challenge isn’t worth it...just too damaging.  So, since you are early on in this saga, you might want to pursue celiac testing.  

But, even if celiac testing is negative, it doesn’t mean gluten is not a problem.  It is really annoying when someone concludes that because you are not celiac diagnosed you don’t need to be gluten free.  There are plenty of people on this site that need to be just as careful as a celiac even though they are NCGS (non celiac gluten sensitivity).  

With celiac disease, it is known that even small amounts of gluten can cause the immune response that damages your intestines.  For some it extends to damage to the nervous system and skin.  For those with NCGS, they just do not know exactly what the problem is so it’s hard to know just what damage is being done.  But clearly there is damage—during my gluten challenge my teeth started to hurt and get loose, my hair was falling out, headache and dizziness made driving difficult, add that to the pain and fluctuating bowel habits and nausea.

So, whether or not you pursue celiac testing, I think it is worth it the treat it as if you do have celiac disease.  Because even small amounts of cross contamination can bring on symptoms.  Read the New Diagnosis 101 thread.  There is lots of good advice on HOW to be THAT careful.  I can tell you that eating out is almost always a bad idea unless the restaurant understands cross contamination.  Even a salad with seemingly nothing on it is likely in a kitchen next to croutons and the crumbs get into the other ingredients, not to mention using the same serving utensils...even a stinking salad is not safe if not prepared safely. 

It is difficult to avoid all gluten in the beginning.  Whether or not each of these gluten exposures is THAT bad or causing terrible damage...no one can tell you for sure.  With celiac disease it is more understood than NCGS.  But I think worrying about how much damage you may be inflicting on yourself may be useless.  Just do your best to feel better and learn for the next time.  You can do this. But there is definitely a learning curve.

Good luck and keep pressing on. The positive health affects are worth it.  

Oh, and FODMAPS.  Go ahead and research it.  But I for one am sick of people putting forth the Fodmap suggestion when your are not celiac diagnosed.  I can eat high Fodmap foods all day long.  Just not gluten.  And because my daughter ‘s doctor tried to blame the Fodmaps for her and wouldn’t listen to me even when I handed her a food log demonstrating it’s not a Fodmap issue, when I did my gluten challenge I used vital wheat gluten just to show the doctor it WAS indeed gluten doing this to me.  

Edited to add: It took me over 6 months to fully recover from all of the symptoms I suffered from on my 4 week gluten challenge.  

[Ennis-TX]

I lived in a shared house the first almost a year.....it was nightmare, I got poisoned almost 2-3 times a week. Fights with family..... I have tons of stories on this and could fill a few pages lol.
Salad....lol yeah I did that, "OH I can go to subway and get the salad and be safe" Yeah right, that was a big mistake, as mentioned above it is in a place with shared utensils, crumbs from croutons, breads, using the same gloves, oh and the fact that flour stays air born for hours...NEVER eat in a place with a flour shared kitchen lol. I recall earlier on at a restaurant when asked what was gluten free they told me the couscous was.....couscous is made from wheat, but little did I know then til later.

Farafel, I know some places that make gluten free mixes for these, and I been meaning to personally to try making a grain free version. I can get you some more info if you want.

OK you mention salmon patties well a few weeks ago I got around to making salmon patties with coconut and fresh dill, completely grain free even, mix it up with the canned smoked or plain they go great in dill, ranch, mayo, ketchup https://www.celiac.com/blogs/entry/2546-samon-cakes-grain-free/
 

Everyone else covered some other topics so I will go on and say to read the newbie 101 section it helps to point out common mistakes, rules, and some good points on avoiding contamination.
https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

A list of some foods
https://www.celiac.com/forums/topic/121802-gluten-free-food-alternative-list-2018-q3/

 

[bad casper]

I am very sensitive to gluten. what i do is avoid anything with vinegar,soy, baking soda,peppers.  Vinegar is made from a grain. Soy is the highest on the list for not safe.  My symptoms are very much like yours.  I have never been diagnosed with celiac but i discussed it with my doctor and he said if gluten free is working then great.  Don't trust all restaraunts. check celiac safe reviews for them. hope this helps.

[bad casper]

Also in the begining  i only messed up 2 times in six months.  since i started eating out and trying new foods recenly, i messed up 3 times in 2 weeks.  I am more carefull now. Indian food is very gluten free where i eat.  You can buy gluten enzymes that help a lot with the symptoms but you need to take one at least within an hour from eating. The last time i got sick was when they brought me a salad with croutons on it. I asked them if they remade it or just took them off. i think they lied.

[GFinDC]

I screwed up more times than I want to think about.  Most likely you won't suffer any permanent damage from an occasional glutening.  Now a gluten challenge of eating gluten for 12 weeks for testing is a different thing IMHO.  That may cause permanent issues, like new food intolerances developing.  But it is not something that is really known how much damage is going to happen to your particular body.

You are right, it is real easy to make mistakes at the beginning of the gluten-free diet.  That's why it is helpful to limit the potential of mistakes.  A good way to do that is to control your diet more closely.  You can do that by not eating out in restaurants, and by switching to whole foods you prepare yourself.  Foods like meats, veggies, nuts, and eggs are good to eat and they have very short ingredient lists like "carrot" or "beef" or "apple".  You should also avoid dairy for a few months until you are used to the gluten-free diet and have given your gut a chance to heal some.  Same thing with oats, give them a pass for a few months.

Eating gluten-free is a medical diet, and that means it should be treated more seriously than a weight-loss diet.  Many people automatically think of weight-loss when they hear the word "diet" and don't take it as being a serious issue.

It is easier to be tested before going off gluten as the gluten challenge can be very unpleasant if done after being gluten-free for a few months.  Some people can't finish the gluten challenge and end up not getting diagnosed.  Actually, most people in the USA with celiac disease are not diagnosed today.

The testing is a simple blood test for gliaden antibodies and then often an endoscopy to take biopsy samples of the small intestine.  Often the endoscopy happens months later.

[ShelleyG]

I agree with person who spoke about FODMAP as I had SIBO which is easily tested and can improve with gluten free but better with FODMAP. I also was diagnosed with NCDS and have also gone off fructans which has improved intractable SIBO AND NCGS.

but obviously get tested for celiac first while you still have antibodies that could be measured or not.

[lyfan]

In the beginning? Hell, I've still poisoned myself ten and twelve years down the line. It only stops when you simply stop eating any processed foods that you haven't scrutinized the label for. Tuna salad in a hospital cafeteria, safe, right? Wrong, they add bread crumbs or gluten commercially as an extender and filler and thickener. Chopped liver? That's just liver and eggs and onions, that's safe, right? Wrong. Commercial products carry gluten fillers again.

Oh, and instant coffee? Right, that's just coffee beans, there's no way there's gluten in that, right? Wrong again, some of it is processed on the same (apparently unwashed and uncleaned, yuch) equipment that processes other powdered beverages that DO contain wheat. Some companies actually warn "Processed on equipment...that may contain..." and wheat and nuts and soy are even listed as possibly being in there. Some companies, happily, know how to steam clean their equipment and produce enough of it to dedicate "clean" equipment to just one product.

You literally can't assume ANYTHING is gluten free. Somewhere out there, some clever soul is probably adding gluten to bottled water to give it that satisfying texture and feel. Bet on it.

[Jonny B. Good]

Brogrammer, sorry to hear you may now be one of us because it's not fun in the beginning. First thing you should do is get tested for celiac and also get an allergy test. You may have celiac, you may have a food allergy or you may be gluten sensitive. If it’s not celiac then lucky you but something is still going on that’s not good so it’s time to eliminate gluten from your diet for now until you have more information. One thing of note for you, know that:

• Celiac causes your body to attack itself.
• Gluten intolerance and wheat allergies cause your body to fight what it has deemed as a foreign invader with inflammation inside and/or outside the body.

First things first. If you have celiac, an allergy (ie: wheat, barley, etc) or gluten intolerance no amount is a good amount. Just a little amount can cause reactions which take months to heal up and so it’s quite easy to be inflamed year round with your condition worsening... You need to cut it all out and not have cheat days or cheat meals or roll the dice on "mystery foods" (ie: be weary of all restaurants, especially right now. Also be weary of anything you didn't prepare yourself and any ingredients you’re using which aren't labeled gluten free). That's not enough though, it goes further than that. You need a kitchen at home that's free of gluten. So your toaster? It has to go. Condiments aren’t gluten free or wheat free? Gone. Condiments which are gluten free or wheat free but you used them in your gluten days? Toss them too if there was any chance for contamination. Also spices and herbs are something you need to be careful with. They're not gluten free unless they say so. So that needs to go and be replaced with gluten free spices. There are other factors but this is more than enough to leave you with for now.

Second, there's another thing you're almost certainly unaware of at your stage: cross reactivity. If you have a gluten intolerance then it is very possible that you have other things beyond gluten which are hurting you. Cross reactivity is terminology you may not know yet so to explain this quickly: your immune system has flagged gluten as an enemy but your immune system isn't perfect and things that look similar to gluten can also be now flagged as an enemy. So your body attacks the gluten and maybe those of foods which contain proteins similar to gluten. Here are cross reactors you should phase out for now until you know more:

• Corn
• Dairy
• Millet
• Oats
• Rice
• Yeast

This list isn't comprehensive but it's a good start for you. There are two ways to test for cross reactivity. You can practice elimination and then reintroduction at a later date or you can get a test. If you’re going to get tested for celiac anyway, get tested for this too.

Also, if you're not on one, start taking a good probiotic. Here are some good options: 

Your primary objective right now sounds like it's to reduce or eliminate symptoms and rightfully so, it sucks being in pain and suffering day to day. So in summary:

• Get tested for celiac
• Get an allergy test
• Get tested for cross reactivity
• For simplicity,  eliminate all gluten sources (ingredients, food & environment)

I hope this post provides some help to you. Good luck and hang in there. You'll find the answers and your way forward but it will require some work and consistency.

 

[Brogrammer]

Thank you all for your input. It seems in addition to the obvious glutinous things I was consuming (bagels, falafel, etc...), the story on the balsamic vinaigrette I mentioned was followed up by the "gluten free" Caesar dressing I consumed... both of which contained soy. I am apparently also soy intolerant. The symptoms I experience with that I would describe as "mild" anaphylaxis, as much as that is probably an oxymoron. My lymph nodes in my neck/throat swell up so bad it's like a terribly sore neck instantly, my breathing is a bit impaired, and I get really lightheaded. The lightheadedness persists for days.

I'm tough, I can put up with some really uncomfortable b$#@@#$$ symptoms for a period of time. But my primary concern is that I get out of this without any permanent damage. I'm a young guy but honestly, this sudden onset of food allergies has me feeling 10-15 years older overnight and I hope that is reversible. Will someone tell me please?

That said, I have an appointment with the "doctor", aka nurse practitioner that works at my primary care place, tomorrow. I hadn't even really set up primary care because before this I was an enviably healthy guy: full of energy, regularly going to the gym, more than adequate sex life, passionate about my work. Anyway, all of that seems to have burned out and now I'm (hopefully temporarily) an old man who needs excessive sleep, has to carefully take advantage of rare bursts of energy and motivation to get something done, and has regular health scares. Anyway, I also scheduled an appointment with the real doctor who is available to see me next month... the nurse practitioner was just available sooner so I scheduled that too.

Keep in mind too that the external remnants of past me are still around. Just because I got terribly ill overnight doesn't mean the rest of my world went on hold with perfect timing. I still have people and organizations left and right that need young, virile, quick witted, insanely productive and passionate me for all the things I was doing. Too bad I'm so lightheaded I worry about brain damage, and as much as I'd love to do all those things my body and mind are telling me to go back to bed or labor through the refrigerator looking for something to eat and hope it doesn't f$#% me over. Oh and just to add another one... though my Paul Mitchell awapuhi shampoo says nothing about soy or gluten, and somewhere on this forum I found a list of gluten free shampoos which that was on... my hair seems to be turning from silk to undercooked pasta.

All that is written above isn't like me either. I'm a giver. I get through s$#& and keep myself afloat so that I can do for others since all my life I've been known to be extraordinarily capable. I am not used to feeling handicapped, unsure of everything, and having to beg for answers. This feels very pathetic but here I go, time to press "submit reply" as much as I am reluctant to do so. I need to figure this s$#& out.

[Jonny B. Good]

It's going to be ok. You need to take action for sure and change your lifestyle for that statement to be correct though... Look at it as a short term thing for now, inch by inch and not foot by foot, then assess how you feel in a month? I know it sucks, I know it makes you feel helpless, I've been there but the best thing you can do right now is embrace change. If you look at the little checklist at the bottom of my post and take action on it, that's a good start. You're not going to tackle this thing overnight, you need to educate yourself and have a plan but the more you change, the better you'll feel.

It took me a decade to get to where I am today and it wasn't easy but it's easier to be living with this in 2018 than it was in 2008. At least the social aspects, which no one likes to talk about, aren't as bad now because most people tend to at least have a vague idea about what it is.

That said, I've compiled all my knowledge and experiences into something I'm working on. It's not ready yet but it soon will be. It might really help you lay down a solid foundation after you're certain it's a gluten or wheat thing.

[squirmingitch]

About this cross reactivity stuff....... I suggest everyone PLEASE read this thread IN FULL along with the links posted in it. 

 

 

[Fbmb]

You'll mess up a lot. You just will. Huge learning curve with going gluten free. Huge. 

I will tell you what others told me. DON'T EAT OUT. Do not eat out do not do not. If you do want to eat out, go to findmeglutenfree.com and search for reputable gluten-free places. There are real people with celiac disease on that site who give feedback about restaurants. There are plenty of places who say, "Oh that's gluten free. We have a gluten free menu. Oh that shouldn't have gluten. Blah blah blah." Bull. Being gluten free is hard. It's hard to learn how to do it. And I highly doubt that the cooks at any old restaurant know how to make sure that my food is safe for me. I sure as heck don't trust them to try. Contamination will be your nemesis forever. 

You may find that you don't tolerate stuff well now that you're gluten free. You didn't notice it before, because the gluten was making you sick, but now that you've cut that out, you may find that things like salads don't set well. I can't eat salad. I can eat spinach in a smoothie, but if I try to have a salad with dressing I get tummy aches. No idea why. 

You will learn that not everything is because of gluten. If you're really good at reading labels, and if you do your own cooking, you'll find that you can be pretty confident that you're not eating gluten. So what else could it be? That's the hard part. Maybe you'll find that you're lactose intolerant. Maybe you'll find that your body doesn't like nightshades. Maybe you'll find that you need to be careful with fiber. But it's comforting to be able to look back and say, "Nope. Everything I've eaten is gluten free. I have cooked all my own meals. I have called all of these food manufacturers are trust that this is gluten free. So I know it's not gluten."

It feels overwhelming at first, but trust me when I say it gets better. It becomes second nature. There's nothing I can't eat. I just modify things. But, I don't have many other intolerances. I am iffy with lactose, but I don't seem to have noticeable issues with other stuff. 

[GFinDC]

Hi Brogrammer,

I am concerned about the issue with blood in the urine.  That isn't typically a celiac symptom, although it could be in some cases.  When you see the nurse practitioner please bring that up.  They should probably test your kidney function.  If that issue ends up being caused by gluten or soy, I'd consider skipping the celiac gluten challenge and just going straight to a gluten-free diet for life.  Kidney disease is tricky, and can cause lots of symptoms by itself.  The thing is, people can have kidney damage going on and not have obvious symptoms until it gets fairly bad.  So that's potentially the most serious near term issue for you IMHO.

There is a possibility of AI kidney disease related to celiac disease.  So if nothing else explains it, that might be a good thing to check on.  Other possibilities include diabetes and kidney infection.

[Brogrammer]

9 hours ago, GFinDC said:

Hi Brogrammer,

I am concerned about the issue with blood in the urine.  That isn't typically a celiac symptom, although it could be in some cases.  When you see the nurse practitioner please bring that up.  They should probably test your kidney function.  If that issue ends up being caused by gluten or soy, I'd consider skipping the celiac gluten challenge and just going straight to a gluten-free diet for life.  Kidney disease is tricky, and can cause lots of symptoms by itself.  The thing is, people can have kidney damage going on and not have obvious symptoms until it gets fairly bad.  So that's potentially the most serious near term issue for you IMHO.

There is a possibility of AI kidney disease related to celiac disease.  So if nothing else explains it, that might be a good thing to check on.  Other possibilities include diabetes and kidney infection.

Hey thanks for your post (and thanks everyone else too).

The blood in the urine was symptom #1 that led me to medical professionals. The first symptom overall though was bloating and severe lower abdominal pain.

When I went to the ER after the blood in the urine, trouble urinating, etc... they said my kidneys and liver both looked fine according to their tests. Would they not catch kidney disease with these? I'm not sure exactly what tests what, but I do know that in the ER, in line with it's name, they tend to look for only emergency issues. They did refer me to a urologist though, who thought it had something to do with my running habits and suggested I be more careful about hydration and maybe take a break from exercising for awhile, which I have done.

I've cut gluten out for about 10 days straight now I think... and soy for 3. Unfortunately the multivitamin I have contains soy, so I haven't been able to take it to replenish what gluten sucked out of me.

As a young man, at this point I'm actually most frightened by the idea of hormone issues. It doesn't seem like it says anywhere that these would be permanent, and if anything I suppose with time it would get better. But I have had a handful of symptoms consistent with elevated estrogen, some in fact with estrogen that is too low, and with my own male hormone, some of the low testosterone symptoms. Growing up I always fell into the high T category behaviorally and in terms of development and sexual profile and all that. Not really something I want to lose.

I just hope the doctor I see tomorrow takes everything seriously and does a thorough job of reviewing my situation. All too often when I've seen a doctor as a male in his 20s, the treatment I get is basically, "oh you're young and successful? Well, looks like you're not dead or crippled yet. Nothing to be done here, run along kid."

Anyway, I want to say thank you again. What a lovely bunch of people on this site who are willing to read these fearful manifestos of mine and offer thoughtful advice. Hopefully I can pay that back and forward as I adjust to the new lifestyle.

 

 

[GFinDC]

14 hours ago, Brogrammer said:

Hey thanks for your post (and thanks everyone else too).

The blood in the urine was symptom #1 that led me to medical professionals. The first symptom overall though was bloating and severe lower abdominal pain.

When I went to the ER after the blood in the urine, trouble urinating, etc... they said my kidneys and liver both looked fine according to their tests. Would they not catch kidney disease with these? I'm not sure exactly what tests what, but I do know that in the ER, in line with it's name, they tend to look for only emergency issues. They did refer me to a urologist though, who thought it had something to do with my running habits and suggested I be more careful about hydration and maybe take a break from exercising for awhile, which I have done.

I've cut gluten out for about 10 days straight now I think... and soy for 3. Unfortunately the multivitamin I have contains soy, so I haven't been able to take it to replenish what gluten sucked out of me.

As a young man, at this point I'm actually most frightened by the idea of hormone issues. It doesn't seem like it says anywhere that these would be permanent, and if anything I suppose with time it would get better. But I have had a handful of symptoms consistent with elevated estrogen, some in fact with estrogen that is too low, and with my own male hormone, some of the low testosterone symptoms. Growing up I always fell into the high T category behaviorally and in terms of development and sexual profile and all that. Not really something I want to lose.

I just hope the doctor I see tomorrow takes everything seriously and does a thorough job of reviewing my situation. All too often when I've seen a doctor as a male in his 20s, the treatment I get is basically, "oh you're young and successful? Well, looks like you're not dead or crippled yet. Nothing to be done here, run along kid."

Anyway, I want to say thank you again. What a lovely bunch of people on this site who are willing to read these fearful manifestos of mine and offer thoughtful advice. Hopefully I can pay that back and forward as I adjust to the new lifestyle.

 

 

That's good you had them look into the kidney issue already.  The urologist should have caught anything serious with the kidneys.  I think the idea of taking a break from running and any strenuous exercise is good.  Celiac impairs our ability to absorb nutrients and that can negatively impact all aspects of our health.  Our bodies can have a hard time repairing damage with out adequate vitamins and minerals.  This can lead to fatigue and weakness.   But our bodies can recover after we give our guts a chance to heal with the gluten-free diet.  It may take some time though.  A year or more is not unusual.  Some of the things we tend to be low on are vitamin B-12, vitamin D and iron.  All of those can affect energy and lots of other things.  I am on rx vitamin D still.

[Ennis-TX]

15 hours ago, Brogrammer said:

Hey thanks for your post (and thanks everyone else too).

The blood in the urine was symptom #1 that led me to medical professionals. The first symptom overall though was bloating and severe lower abdominal pain.

When I went to the ER after the blood in the urine, trouble urinating, etc... they said my kidneys and liver both looked fine according to their tests. Would they not catch kidney disease with these? I'm not sure exactly what tests what, but I do know that in the ER, in line with it's name, they tend to look for only emergency issues. They did refer me to a urologist though, who thought it had something to do with my running habits and suggested I be more careful about hydration and maybe take a break from exercising for awhile, which I have done.

I've cut gluten out for about 10 days straight now I think... and soy for 3. Unfortunately the multivitamin I have contains soy, so I haven't been able to take it to replenish what gluten sucked out of me.

As a young man, at this point I'm actually most frightened by the idea of hormone issues. It doesn't seem like it says anywhere that these would be permanent, and if anything I suppose with time it would get better. But I have had a handful of symptoms consistent with elevated estrogen, some in fact with estrogen that is too low, and with my own male hormone, some of the low testosterone symptoms. Growing up I always fell into the high T category behaviorally and in terms of development and sexual profile and all that. Not really something I want to lose.

I just hope the doctor I see tomorrow takes everything seriously and does a thorough job of reviewing my situation. All too often when I've seen a doctor as a male in his 20s, the treatment I get is basically, "oh you're young and successful? Well, looks like you're not dead or crippled yet. Nothing to be done here, run along kid."

Anyway, I want to say thank you again. What a lovely bunch of people on this site who are willing to read these fearful manifestos of mine and offer thoughtful advice. Hopefully I can pay that back and forward as I adjust to the new lifestyle.

 

 

I found I still have to supplement with B-vitamins, Vitamin D, Magnesium, and take some other things due to my odd diet restrictions. I had to go to a paleo diet with a keto/atkins base to manage another AI condition I got, I found the low/no carb diet removed most of the bloat and the fat/ketones for energy instead of carbs/sugars made it easier for me to maintain weight training and working out. Takes awhile but once you get through the transition to burning fats instead for energy (keto flu they call it) it is quite worth it.

I use Energy & Stress by Liquid health for my B-vitamins they also make a liquid vitamin D, Magnesium I bounce between Doctors best and Natural vitality calm depending on my bowel habits.

On hormones, avoid soy for these reasons some other foods can hurt T levels, higher intake of vitamin A and C have shown to boost T and athletic ablitites and a intermittent fasting coupled with a keto based diet are big thing among body builders now as it has shown to boost growth factor hormones and T. You might want to wait a bit til your gut heals before trying these though....I still find the intermittent fasting harsh on me for more then a few days.

[Brogrammer]

Yeah I have always been a rather thin guy (even after several months straight of 4-5 days a week exercise that has me looking pretty "ripped", I'll still only weigh like 140, and I'm 5'10''). So with my metabolism, fasting is definitely out of the question.

Anyway, just got back from the primary doctor. They referred me to a GI and an allergist. I saw two people in there and one said she's fairly certain it's exactly the gluten and soy intolerances I suspect. The next guy was a bit of a "routinist" as I think I'll call them, and ordered a bunch of blood tests including HIV. Of course that last one scared the s$#& out of me at the mere suggestion of the test, but according to him when I inquired about why, it's a routine thing.

The ridiculous and unfortunate thing about this whole sudden food allergy/intolerance thing as I'm sure you all know, is the litany of other things with quite similar lists of symptoms: diabetes, HIV and other autoimmune stuff, diseases of the thyroid, blah blah blah.

I'm not a "foodie", I just try to be healthy... so I'm not the slightest bit bothered by the prospect of a life without gluten or soy containing products. There are other delicious things to eat, and in the end I get my sensory enjoyments elsewhere. But this other stuff, the complications, other possibilities... no thanks. As I'm sure is the case with everyone else, I am not looking for a new long term health problem. A diet change is one thing; a new emergent disease or disorder is another.

Stay tuned, my new friends. Haha.

[Ennis-TX]

26 minutes ago, Brogrammer said:

I'll still only weigh like 140, and I'm 5'10'')

I am 5' 11" and 130lbs I eat like crazy and even take scoops of protein powder before bed. Tons of fats with nut butters, baked goods made with nut meals, seed meals, practically binge on cocoa nibs, scoops of protein powders, avocados, bloody 8-12 egg quiches, scrambles with my own flat breads/coconut wraps, califlour pizza with eggs vegan cheese and veggies, or omelettes every morning loaded with leafy greens and some times fish or vegan meats (digestive issues with other meats). Protein smoothies in the evenings loaded with nut butters, and blended green shots , nut meal porridge, wraps, or baked goods sometimes for lunches. Snacking on nuts constantly.
But I work out like 7 days a week rotating muscle groups.....and I have a nervous pacing/bike riding thing and go at least 16 miles a day. Health monitor has me burning 4200-5000 calories a day average....but I chock a good amount of that up to anxiety and pulse rates.

I ended up building my life around this disease to give me purpose, I started a gluten free bakery, paleo catering, I try to body build and get the best body I can despite all my health issues cause.

[GFinDC]

Hi Brogramer,

I don't do soy either.  Soy doesn't give me immediate symptoms like yours but ti does cause problems.  However, I can eat soy lecithin ok.  I am not sure what the difference is but maybe it's something that you will be able to do also.  Generally though I believe it's best to avoid soy (poison).

I don't remember if they gave you the full celiac disease test panel?  You may still have enough antibodies to test positive.  Anyway, tests or not, if you feel better not eating gluten that is the main thing to know.  Recovery from celiac damage can take over a year, so it helps to develop a little patience with your body.

[Brogrammer]

Screwed myself over with some bad bad granola. Darn. But my longest successful gluten free streak, coupled with eliminating soy for three days, did show me another glimpse of the bright future.

Anyway, looking into good cures for gluten induced constipation. I've never had a problem with bowel movements, they all happened quickly and easily, until this gluten intolerance thing... and now constipation is a regular symptom I get. This time it seems like my pelvic/intestinal area hurts more rather than just feeling full. Again I hope there's no damage, I was hoping to catch this and learn to avoid it before something long term went wrong.