Sort Of Confused And My Story..and Question.

[Matt007b]

Hello Matthew here..

I came down with a UTI back in the fall of 2005, had an allergic reaction to it that antibiotic I was put on (flagyl) sent me to the ER room with severe nausea and dehydration..then after months of antibiotics trying to clear this infection I was nauseated..sick since then. It was 2 weeks before my flight instructor checkride

Anyway, i've had it all..ct scans/mri's/colonscopies..endoscopes..blood tests..

Only postivie consitant test was white blood cells in the stool with no culture (meaning inflammation somewhere) and slight gastritis...with low potassium levels which i'm taking potassium pills now. No effect.

My current symptoms are, nausea..sometimes heavy to the point where I have to lay down, abdominal pain..constipation, sweaty palms, insominia, anxiety attacks.. haven't worked in 8 months and i'm super super poor now with zero insurance (all my savings on testing for what the problem was..)

Soooo over the years I did 3 blood tests, testing for celiac.. not sure how accurate they were but i'm not sure if I ever got properly tested but they all came back negative. Did biopsies in my 2 endoscopes but again not sure if they were looking for it...they were just looking for anything to show up..

I got another opinion from a GI specialist and he suggested it's probably some form of malabsorbtion caused by food allergy of some kind. I went off lactose a few weeks ago and noticed some improvement with my nausea but also noticed that's a side effect of celiac/gluten.. So I went to an allergist and we found I was slightly allergic to oats but the doctor said I could either order ANOTHER celiac panel test ($$$$) or just go gluten free for a few months and see what happens.

So since i'm broke..i'm going gluten free..day 5 now and I know this is going to take time, if this is what it is..I have noticed some improvement in my IBS issues already and since going lactose free (wasn't lactose intolerant before getting sick..) my nausea levels are dropping but still are there..still sick but I'm crossing my fingers.

My question is: I don't want to waste months and screw up.. a few days ago I thought to myself "ok I should take some fiber..maybe that'll help my IBS symptoms" and I took benefiber which was listed 'gluten free'...about an hour after taking that I was in my bed with severe nausea and the next day full of IBS constipation..dark urine..I noticed the ingredient "wheat dextrin" was in it...aren't we supposed to avoid that??

Second and more important question..i've read that some people are just wheat intolerant instead of celiac's...isn't it the exact same diet? I'm avoiding everything gluten right now and I can tell you i've been gluten free for at least a few days now so far. But I don't want to starve myself just to find out that wheat intolerance diets are more strict or the other way around.. can anyone give me advice on the diet?

Thanks,

Matthew

*thanks in advance i know that was a book sorry.. trying to figure out the difference between wheat intolerance and celiac and the difference between diets..I don't want to screw up I need to get back to work asap...yikes....credit cards pilling up on me

[The Fluffy Assassin]

trying to figure out the difference between wheat intolerance and celiac and the difference between diets..

Welcome Matthew,

Actually there are three different possibilities (revolving around wheat): wheat allergy, gluten intolerance, and celiac sprue. The latter two require the same gluten free diet: no wheat, no barley, no barley malt and possibly no oats. Wheat allergy is just what it sounds like, and so the dietary approach is just to cut out wheat. As you clearly can't afford additional medical expenses, you might want to start out by cutting out wheat and see if that makes a difference. If after a week or two you're still feeling bad, cut out the barley and barley malt. A year and a half ago when I started, this basically meant giving up breakfast cereals and beer, but these days both are available gluten free. Really, gluten free living isn't that hard, and if you're flat broke you'll save a lot of money. Eat in, meat, eggs, fresh vegetables, fresh fruits, potatoes, rice, corn. After a couple of weeks gluten free, you should either start feeling a lot better or start looking for something else.

(By the way, Lact-Aid takes care of lactose intolerance completely. If you take one and still have trouble with dairy, this might indicate that you are sensitive to casein.)

Regardless, good luck to you, and again welcome.

[Matt007b]

Welcome Matthew,

Actually there are three different possibilities (revolving around wheat): wheat allergy, gluten intolerance, and celiac sprue. The latter two require the same gluten free diet: no wheat, no barley, no barley malt and possibly no oats. Wheat allergy is just what it sounds like, and so the dietary approach is just to cut out wheat. As you clearly can't afford additional medical expenses, you might want to start out by cutting out wheat and see if that makes a difference. If after a week or two you're still feeling bad, cut out the barley and barley malt. A year and a half ago when I started, this basically meant giving up breakfast cereals and beer, but these days both are available gluten free. Really, gluten free living isn't that hard, and if you're flat broke you'll save a lot of money. Eat in, meat, eggs, fresh vegetables, fresh fruits, potatoes, rice, corn. After a couple of weeks gluten free, you should either start feeling a lot better or start looking for something else.

(By the way, Lact-Aid takes care of lactose intolerance completely. If you take one and still have trouble with dairy, this might indicate that you are sensitive to casein.)

Regardless, good luck to you, and again welcome.

ooo great ideas thanks fluffy! especially about the dairy. I've been totally dairy free over 2 weeks now and it has helped. I have been meaning to buy lactaid and i'm doing probiotics (gluten/dairy free threelac) but that's a great idea about casein. I've been wondering about that one... yeah i'm convinced it's some form of malabsorption caused by a food intolerance with my heavy nausea waves that hit after eating, the anxiety..the total IBS mess, sweaty hands..forgot to mention tingling/cold feet hands.... now what it is I don't know but it's got to be one of them. I've been tested like I said 3 times for celiac..and 2 endoscopes...if I had money i'd just call my gi and ask for a breath test for fructose to eliminate that because i'm even thinking of going fructose low/free for a few weeks..then go wheat...gluten..like you said. Wish I could sleep...and work!

Yeah i've lost 10 pounds already on this gluten free diet (now 165lbs..feel week..tired..hungry but hey it's quite the trimming diet i'll admit) and i'm not losing it on purpose so yeah it sure is cheap living on this diet. Just miss making a sandwich or grabbing whatever I wanted at the local 7-11..

Thank you that helped greatly that's a good idea. I've heard of wheat intolerance (or non-celiac) and I have a bad hunch I'm one of them but I didn't know there where 3 types...I swear doctors just don't have the time to explain these things and I regret letting them talk me into all the mass ct scans/mri's *sigh* or else I wouldn't be stressing about money/work....

anyway.. thank you very much good info.

[The Fluffy Assassin]

forgot to mention tingling/cold feet hands....

Just miss making a sandwich or grabbing whatever I wanted at the local 7-11..

By tingling, do you mean pins-and-needles? If so, that's the classic sign of B12 depletion, which is in turn a classic sign of celiac sprue. (Or you might be Spiderman, I don't know.)

As to sandwiches, go get soft corn tortillas and make wraps. They're cheap, they're wonderful, they're versatile and they're gluten free. I truly have completely forgotten to miss bread. I get mine at Aldi, but they're in every store, even here in BFE.

[Foxfire62]

Did they do a full blood panel to test for celiac disease? Did they biopsy the small intestines to look for villi atrophy? If yes, and nothing was conclusive, you could have Crohn's disease, ulcerative colitis, celiac disease, MS, or an intolerance. Probably the best thing to do is stay away from all things gluten, including anything made from wheat, barley or rye, and to play it safe, also stay away from oats.

It would take a little time to get better, but you will. Also, should you have celiac disease, you may become intolerant to some if not all the major allergens (lactose, soy, eggs, fish, peanuts, etc.). You might want to lay off those for awhile and reintroduce them in your system slowly and see if you have any reactions. Also, you always have to check your meds/vitamins to ensure there are no allergens (including wheat, barley, rye or oats) in the product. Check your make-up, lotions and shampoos as well. Don't lick stamps, and wash your hands thoroughly after touching glue-based products. Keep a clean kitchen to ensure less chance of cross-contamination. Better safe than sorry. Stay away from restaurants until you are your old self or close to it. Also, cook from scratch and ensure meat products do not contain any hormone injections that could be a hidden source of gluten. Lastly, as you start healing, you might find your intestines still cannot process meat products (I believe I just figured that one out myself for me). If so, you might want to do a salad/veggie/fruit diet for a few days and see how you do. Reintroduce everything slowly after you found start feeling a lot better. But most likely, you should do fine...I suffer from constipation, so you might not have this problem.

Above all, keep a food journal!!! I did not listen to my husband and only sporadically kept one. Had I kept one initially and kept at it, I would have found out my problem a lot sooner than I did.

Good luck to you.

[Matt007b]

By tingling, do you mean pins-and-needles? If so, that's the classic sign of B12 depletion, which is in turn a classic sign of celiac sprue. (Or you might be Spiderman, I don't know.)

As to sandwiches, go get soft corn tortillas and make wraps. They're cheap, they're wonderful, they're versatile and they're gluten free. I truly have completely forgotten to miss bread. I get mine at Aldi, but they're in every store, even here in BFE

Did they do a full blood panel to test for celiac disease? Did they biopsy the small intestines to look for villi atrophy? If yes, and nothing was conclusive, you could have Crohn's disease, ulcerative colitis, celiac disease, MS, or an intolerance. Probably the best thing to do is stay away from all things gluten, including anything made from wheat, barley or rye, and to play it safe, also stay away from oats.

It would take a little time to get better, but you will. Also, should you have celiac disease, you may become intolerant to some if not all the major allergens (lactose, soy, eggs, fish, peanuts, etc.). You might want to lay off those for awhile and reintroduce them in your system slowly and see if you have any reactions. Also, you always have to check your meds/vitamins to ensure there are no allergens (including wheat, barley, rye or oats) in the product. Check your make-up, lotions and shampoos as well. Don't lick stamps, and wash your hands thoroughly after touching glue-based products. Keep a clean kitchen to ensure less chance of cross-contamination. Better safe than sorry. Stay away from restaurants until you are your old self or close to it. Also, cook from scratch and ensure meat products do not contain any hormone injections that could be a hidden source of gluten. Lastly, as you start healing, you might find your intestines still cannot process meat products (I believe I just figured that one out myself for me). If so, you might want to do a salad/veggie/fruit diet for a few days and see how you do. Reintroduce everything slowly after you found start feeling a lot better. But most likely, you should do fine...I suffer from constipation, so you might not have this problem.

Above all, keep a food journal!!! I did not listen to my husband and only sporadically kept one. Had I kept one initially and kept at it, I would have found out my problem a lot sooner than I did.

Good luck to you.

Yeah if I sit or lay down and read a book with my arms on a table or on my sides holding the book up, my hands get numb...which didn't happen before..now that i'm on this diet they're not doing it anymore so another signs...but yeah I guess you could say my fingers would get tingly..also I read somewhere that asprin really sets off symptoms. Like I had one doctor tell me to take a bunch of asprin thinking it was some airborn allergy and all that did was give me major diareera..so weird things..

I *believe* they did at least the last test I was reffered to a rhumatologist who did a full antibody panel not specifically looking for celiac but it was looking for any inflammation markers, but I know on for sure 3 other blood tests came back negative but I do remember one doctor saying mild hint looking at the numbers "borderline but I don't think so" on celiac... i've had 2 colonoscopies..one upper bowel barium xray (that was fun drinking elmers glue) multiple ct scans and mri's.. doctors have told me it's not UC/chron's/stricture..nothing so they can't see anything wrong. My white blood count is low and constant white blood cells in the stool..with vague abdominal pain in my upper left region, left side..but my pancrease has been totally checked with imagining and blood tests so I have a hunch my small intestine is just inflammed and ticked off and I'm having some spastic colon like symtpoms as well. I'm doing citurucel fiber right now trying to relieve the pain. Even had a camera go up a guys...well..let's just say it felt like a number 2 pencil going up there with a cute nurse in the room=not fun.

On the endoscopes we were looking for anything, not celiac specific...I know they did a few biopsies last endoscope in feb. just to see if we got luck..all it did is drained more money

I didn't know that about celiacs becomming intolerant to everything, I heard about diary/lactose :S I've been eating eggs and soy waffles (gluten free/wheat free) but that's not good hopefully that's not a problem as well.. ugh I wish there was an easy way to this like a simple blood test to tell you what is the cause. I have enough funds maybe to last 2 months or I have to sell my only transportation (my car..) so I've got to figure this out. :S I mean it could be fructose as well.. but since I reacted badly to benefiber and not citrucel i'll keep after the wheat/gluten theory I guess.. and tone down on eggs and soy and just go fruits and veggies as much as possible. I'm approaching week 1 on the elimination diet. Thanks for your info you 2.