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Some Wacky Symptoms...

GF avenger

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GF avenger Apprentice
GF avenger
Posted

I guess I'm really asking if this sounds like celiac -

I had a UTI for a year that wouldn't go away with LOTS of antibiotics - never had anything like that before, finally got smart and asked the ND to check for food intolerances.

Had the IgG test - came back positive for gluten, gliaden, whole wheat, spelt, and about 10 other things. Diagnosed leaky gut. February 2007.

Went off wheat and other things immediately, digestion felt much better! UTI didn't clear up.

Silly me suggested to a silly doc that we test for celiac in March of 2008 - since I'd been able to add dairy, eggs baked into gluten-free goods, etc. back in after a long time off, but wheat was still a problem. Neither of us knew that I had to have been eating wheat for the TtG test to come back positive - and thus I consider the result a false negative. Is this possible?

Now I know better, and suspect this is celiac, not just "wheat intolerance." For the last month, I've been gluten free - got rid of the oats I was eating EVERY DAY, and got more careful about the other grains, hidden stuff, etc.

Other symptoms - 3 cavities show up in one dentist visit after a lifetime of none; really tiny cuts taking a really long time to heal, and seeming to spontaneously infect themselves; really want to sleep about 9-10 hours a night, and then wanting a nap during the day; generally foggy brain all the time; and then of course this UTI, going on 2.5 years!! I kind of assumed these things would clear up?? Then again, I've only be GLUTEN-free for about a month, but perhaps wheat free for over a year...

I'm unwilling to do the gluten challenge. I know how I feel on wheat. I'm wondering whether it's worth getting the celiac diagnosis based on these symptoms - or if anyone else has run into symptoms like these?

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RiceGuy Collaborator
RiceGuy
Posted

It does sound like Celiac to me. I also think there might be a possibility of an intestinal yeast overgrowth (candida). Some probiotics and a good Open Original Shared Link might help a lot. Both Celiac and antibiotics make a happy home for candida. Of course, avoid sugar, yeasts, vinegar, and fruits at the same time. Also, Open Original Shared Link helps with fatigue, sleep issues, brain fog, and a zillion other things. How are your nails?

ShayFL Enthusiast
ShayFL
Posted

Google "D-Mannose" as well as this can help the UTI.

MyMississippi Enthusiast
MyMississippi
Posted

Have you been checked for diabetes ?? UTI's and slow healing wounds, fatigue, are some symptoms you have that could be diabetes.

As for the gluten issues---- if you must avoid wheat (as I must ) it's just as easy to be gluten free as wheat free. And that way you cover all your bases. :)

GF avenger Apprentice
GF avenger
Posted
  • Author

Wow, you guys rock! Thanks for getting back to me so quickly!

I'll try to answer all of your good questions.

I don't think I've been directly tested for diabetes. At the very least, there's no ketones in my urine, which as you might imagine, has been extensively tested. My sense is that diabetes is probably not the problem, though I've yet to rule it out completely. I will check with my ND about possible other markers.

I have taken D-Mannose along with a variety of other supplements, sometimes simultaneously with the antiobiotics over many many months, with seemingly no effect. I should add that the UTI is atypical - no burning, very little urgency if at all - it's really just that my urine stinks like I've eaten a truckload of asparagus, pretty much every day, and of course, it tests positive for E. Coli every time.

I've had candida mentioned a few times - but I've gotten so much flack/disbelief from my urologist and a healthy amount of skepticism from my ND that I'm not sure where to go with it at this point. Are there any practitioners that take candida/yeast seriously?

My nails are good, thus far, thanks for asking!

With the possible exception of the oat contamination issue, I agree with MyMississippi that gluten-free is just as easy as wheat free - I'm getting better about checking for hidden gluten, and advocating for myself at restaurants. I'm now assuming that it's celiac...

mushroom Proficient
mushroom
Posted

I have had a lot of your problems. Continuous e.Coli UTI's, not cured by antibiotics (solved this problem with cranberry tablets); small skin cuts infecting (just had a shave biopsy and it infected--antibiotic cream very slow to work); can't seem to get enough sleep--keep nodding off watching the olympics. Basically my immune system is shot. Very thin skin which bruises easily. No diabetes or candida. I'm afraid I don't have any answers for you other than to suggest your ND does a Diagnos-Techs panel on you--see my post in another topic (leaky gut and other issues).

gfpaperdoll Rookie
gfpaperdoll
Posted

I went thru that UTI routine for over 30 years. I am an expert on antibiotics... Occasionally I would go in to the doc, leave my sample & tell the nurse which antibiotic I wanted her to call in... :) I had it down, never missed a beat on my way into the office!!! I sure was not going to waste my time talking to the doc!!! Mostly I just called them, at least once a month!! they also wanted to replace my urethers with plastic ones. :( I said NO, & good thing because now I am fine!!

UTI's got somewhat better when I was mostly wheat free for 10 years. Totally gone when I went gluten-free 4 years ago.

I also do not have anemia anymore - had that since I was about 8...

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GF avenger Apprentice
GF avenger
Posted
  • Author
UTI's got somewhat better when I was mostly wheat free for 10 years. Totally gone when I went gluten-free 4 years ago.

I've definitely noticed a change in the UTI since going wheat free - fewer incidences of painful symptoms, but I'm frustrated that it's still around at all. I wonder if the fatigue has something to do with having to fight off an infection for 2.5 years. I'm also blaming the antibiotics for kicking off the leaky gut/immune system stress/etc. that might have triggered the celiac, so I'm not really interested in treating it via this 'traditional' method.

I was on cranberry for a really long time, didn't seem to do anything. I've recently been doing some reading about interstitial cystitis that suggests that taking cranberry once you have an infection is like throwing gasoline on a fire, with regards to the lining of the bladder. Interesting! Ack!

Mushroom, I'll check out that other post. Have you found any good ways to boost your immune system?

somewhat-damaged Newbie
somewhat-damaged
Posted

Wow...I had no idea that UTI's had any relation to Celiac. I have also been dealing with chronic UTIs and was getting really frustrated. When I had to explain to the doctors that I STILL had an infection after 2 rounds of anti biotics it was awful. I always felt like they thought it was somehow my fault. I can't think of a whole month UTI free in about the last year.

Your symptoms DO sound like Celiac, from as much as I know about it so far. And obviously I am still learning about it, since I just discovered the link to UTI's and cavities. Which are both symptoms I have and never connected.

Thanks for your post!

gfpaperdoll Rookie
gfpaperdoll
Posted

I know one thing & that is that if you have UTI's there is a food causing it.

It might be something else in addition to gluten. I am also mostly grain free.

So to start I think that you need to be completely gluten-free, (good to be grain free) dairy free, & soy free.

Then from there it should be easier to figure out if it is another food causing your problem.

I would start by looking at the nightshades, the high lectic foods, the high glutamate foods, & citrus. A word on citrus, orange juice is bad but an orange you might be able to tolerate. Orange juice is concentrated & does bad things to your sugar levels which in turn messes up your joints. Also, pay attention to food combinations.

Maybe you can eat tomato sauce but when you eat a lot of tomato sauce at the same meal with potatoes you might have a problems...

Good Luck - you will get better

GF avenger Apprentice
GF avenger
Posted
  • Author
I know one thing & that is that if you have UTI's there is a food causing it.

Thanks for your thoughts. I've been thinking that I might need to get more serious about this - I know there are a few other things I react to, though obviously not the same way as I do with gluten.

Soy is plenty easy, but I do so love ice cream. Sigh.......

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      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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