quincy

3 months into gluten-free diet, now going back on gluten for the purposes of biopsy and endoscopy. I saw a GI yesterday and he didn't say I had to go back on gluten, but rather said if I wanted the confirmation of the biopsy that I should.

If the majority of my symptoms that I have issues with, mood instability, pain in my left abdomen, fatigue, concentration problems, and bloating, peripheral nerve pain and tingling, had all gone away in the past 3 months of being gluten-free, I probably would have said no. But they didn't. Fatigue and concentration have not improved at all, bloating is practically gone though, and the ever present pain in my abdomen almost went away and then came back in full force when I got the flu a couple weeks ago.

When talking about the pain in my left, I should have mentioned that I think it might be my kidneys, but I didn't. And then he said that he thinks I might have IBS along with celiac disease, which he thinks might be caused by my colon having spasms. Sure, that seems like it might make sense, especially seeing as I tend to get a lot of muscle spasms, and the nerve dmg may be more widespread than just my hands, feet and face. BUT...

The side of the family that I think the celiac gene comes from has lots of kidney issues, which I have told my family doctor about. Grandmother died of kidney cancer, have an aunt who has tumors on her kidneys for 15 years or something now, and an uncle who suffers from kidney stones frequently, cousin who has had kidney and bladder problems since a child who just recently self-diagnosed as celiac or gluten intolerant.

I swear I had a kidney stone a year or so back, pain started in my lower back, thought it was just regular back pain, but it got worse and then when falling asleep that night, if I moved at all I had such shocking pain in my front abdomen. The next morning was fine (or as fine as I ever am), but there was no stone in my urine or anything like that. I have since had a urinanalysis done, and it's been all clear except the possibility that my creatinine might be low/high enough (whatever it has to be) to potentially have kidney issues.

The GI didn't mention kidneys at all when I saw him, and my family doctor just dismisses the possibility.

I'm just finding this whole thing very frustrating. My bf has had ultrasounds and EEG's for problems that don't plague him everyday but he gets them 'just in case'. But oh no, for me its 'just wait until we see what happens when you're gluten-free' and before that just 'excersise more and eat probiotic yogurt' because they thought I was constipated even though I specifically said I wasn't, and now it's 'you probably have IBS', to which we can't do anything but that's what you have. I have NEVER heard of anyone being diagnosed with IBS without having BM issues, which I don't have. (Well, if I have caffeine I can get them, but that's what caffeine DOES, that's one of the effects of the drug)

The whole urinanalysis doesn't even make any sense to me if I'm worried about 1 kidney. It measures overall kidney function of both kidneys. I could theoretically have one be a dessicated black sac sitting in my body and still have a decent urine test. No doctor has yet to mention the overlap of IgA nephropathy and celiac disease yet either. I just found out about that myself today by looking stuff up.

I've also had no one look at my ovaries, (a concern I also mentioned to my family doctor), and ovarian cancer's symptoms are about as vague and match my own symptoms too.

Seriously, how much problem is it for me to have 1 ultrasound? Look at my kidney and my ovary and my colon all at the same time.

I guess I'll just have to settle for a colonoscopy for 'now', 'now' being probably 6 months from now because they're probably booked back that far.

Darned if I know. I don't know why I'm surprised by all the BS that I have to go through. I'M the person who asked the doctor to test me for celiac disease. 5 years of seeing various doctors and no one even mentioned the possibility. And I think he only gave it to me because it was at the walk-in clinic on a friday night b/w xmas and new years and I was like the second last patient he was seeing, and he was in a rush and just wanted me gone because I went in and started rambling off a list of my symptoms and he finally interrupted me and asked 'What do you want?'

.

sorry to hear about all of the problems you have been having, and lets hope the diagnosis gets resolved soon. I know what you are going through as I have been there. It took months for my upper right quadrant pain to go away after going gluten free. It is true that if your intestine is inflamed or enlarged it will put pressure on your back and its very uncomfortable.

before I was diagnosed with endoscopy I was going to a urologist because of kidney/bladder issues and they sent me for a ct scan first thing. They found several benign cysts on one of my kidneys. perhaps you can go to a urologist to find out about your kidney. keep us updated on your situation. thanks.

Ask your naturopath if this is a true (ige) allergy test or if it is a sensitivity test. I just had something like you described done and am waiting for results. You are NOT going to have anaphylaxis (bad allergic reaction) to anything that scores high on this test. These show the more subtle aches and pains that you only notice when you eliminate after the testing.

I just had the ELISA test for 90 foods. It showed "servere" for dairy, casein, and peanuts and moderate for egg yolk. Its a good tool I think for those with ongoing IBS because it may indicate that there are other intolerances beside gluten. It cost me $195 dollars through my doctor (functional medicine).

Frequent, urgent needs to urinate are a common symptom of gluten exposure for 2 out of 4 of the gluten intolerants in my family (the two with the most "classic celiac" symptoms and genetics). Cross contamination can trigger a bout of frequent, urgent needs to get to the toilet for us. I am still trying to understand it better, but I think my bladder might just have some spasms with gluten exposure. Our needs to urinate in these situations seem to be independent of our fluid intake.

I know this is an old thread, and since there are MANY threads on this topic, I thought I would just respond to this one rather than start a new topic

I have been gluten free for almost 2 years. Just prior to my diagnosis I went through a bout of pressure, urgency and frequency. Urologist could not find any infections but did a CT scan. nothing showed up as unusual. Eventually it went away but now it has come back and with a vengeance.

alot of celiacs also have IC and I have suspected this. My prostate is not enlarged though I do have alot of calcification. I have no blood in urine and urine cytology is negative for cancer cells. I really don't want a cystoscopy right now, I am too upset about these symptoms.

if anyone has gone through this even after going gluten free, I would love to hear your story. It really helps to learn that I am not alone. I worry that it is something serious which doesn't help the situation.... thanks

thanks! yeah, i think i will start keeping track of what i eat. also, i have been taking a heavy dose of probiotics twice a day for almost a year now. is it possible that maybe since my intestines are starting to heal that this dose is too high and is causing my bloating?

are you also dairy free and are your probiotics dairy free? Depending on what you are eating, there are many foods that will ferment in your gut, bypass absorption in your small intestine and pass into your large colon undigested which can cause dysbiosis and bloating, gas etc.

check out the FODMAP diet and perhaps switch to low FODMAP foods for awhile and see if you feel better. you would be surprised at some of the foods that we think are healthy for us, but in fact, since we have leaky gut, the foods we consume are actually counter productive to a damaged gut.

I take a dairy free probiotic, Ultra Flora DF by metagenics but I am sure there are many good dairy free probiotics out there as well.

The Internet guy from Texas isn't the only one to say all grains are bad for your health. Even Loren Cordain the paleo Dr says that grains even things like quinoa are not so healthy. I think I read rice is the least bad.

I skimmed that book quickly and maybe missed certain things but in the paleo diet from Cordain, even white potatoes and sweet potatoes aren't friendly food (for anyone not just for celiacs). Is there another paleo diet custom made for celiacs?

Right now, I have different intolerances on the top of gluten and I eat potatoes regularly. I was disappointed when reading Cordain's book...there is no ideal diet for gluten intolerant people.

Yes, I have heard of him as well. I was not aware of the potato being on the bad list though. Millions of asian people eat rice every day and I don't think they have these problems so it makes me question the entire premise. I think it has more to do with the processed foods that we eat that cause inflammation rather than the actual grain (other than gluten for us of course).

Acidophilus is only ONE form of probiotics. The human gut has many different strains, so a multi-strain one may be more beneficial to you.

Probiotics should ALLEVIATE constipation and diarrhea by balancing the gut flora, so this perplexes me.

hmm...do you drink enough water throughout the day? often constipation results because of too little hydration. (people assume it is not enough fiber)

Two good ones are made by Custom Probiotics and an OTC one called Culturelle (get the Dairy Free one). My GI doc recommended the last one and it is backed by research.

Try a low dose first, then work your way up and drink a LOT of water.

Just a thought! IH

I take Ultra Flora DF (dairy free) by MetaGenics. It has bifido, lactobacillus and acidophilus. Its a good one. when you first take a probiotic you can feel a little loose bowel but your body will adapt pretty well. If you have constipation this will help alot.

I have an ovarian cyst but its not the "bad" kind of thats what IC means??? Sorry Im slow! LOL

IC means Interstitial Cystitis, its a condition where the mucous lining of the bladder breaks down and causes burning, frequency and urgency of urination.

it sounds like if sediment is being released then it is something different than IC. They say that taking magnesium supplements or having a multi vitamin with magnesium will help with the calcification in the kidneys, bladder etc. has anyone else heard of this?

I go on IC-Network as many people with Celiac also have IC.

I am also dead sick of thinking about every damn thing I put in my mouth, not being able to go out with friends anymore or having to be "different" at a restaurant (if I can find one), not able to drink what I want and searching for stuff I can have. It SUCKS. Celiac disease SUCKS...there I said it!

for me, the benefit would be great if not eating pizza and donuts and bowls of pasta with butter would be healthier (which I know it is), but I eat all this

organic stuff, whole foods, and when I get a craving for carbs, ok so I was eating a bowl of rice chex w cinnamon. and still my cholesterol is so whacked!

sometimes I have gone to my buddies' house and wanted to eat the pizza with the other guys. I have smelled the pizza and I think, I am just gonna eat this I dont care, I feel crappy anyway so why not just put up with the discomfort anyway.... it does suck, but thank God its not life threatening at least for most of us that dont have other major complications...

I wonder if the over using antobiotics creates other problems on it's own that aren't related to celiac. I used antibiotics for years to manage acne and I'm very sure they did some damage too. Our intestines are sensitive to begin with, then add all that chemical crap and they get even worse. I hope they're not ruined for life.

On another note, I know a lot of people that thrive on grains, but they don't have celiac. So many people who do have celiac don't feel much better after switching to gluten-free

products and many have gone grain free with good results. I'm not going to say that I'm healed or that I don't have bad days, but at least I'm not sick 5 days out of the week.

I take probiotics for sure. and yes I think antibiotics mess us up and can perhaps start the celiac damage process. I was taking cipro actually a few months before I began getting abdominal pains to the point where I had to get an endoscopy and thats when they discovered the damage.

Any problems I had before DX---that are similar to those you listed? All gone.

Avoiding dairy is easy enough, even though I did not like it. I did it for 10 months after DX.

Use coconut milk. I could not eat eggs either. And I had to avoid citrus, coffee, chocolate, sugar, and soy. That was tricky.

I had a burning GI tract, so it was difficult to eat most things.

But it all subsided and I am okay now.

One question--How long have you been gluten-free???

I have been gluten free since my diagnosis in April 2010. But I have had alot of problems because I had several bad sinus infections, then it was other things that they put me on antibiotics for and that has really caused me alot more trouble...

yes I have the pot belly too. people on the IC network say the pot belly is typical of the IC condition. Do you have bladder

problems as well? urgency, frequency, collicky feeling above the pubic bone?

I am avoiding all citrus fruits because the IC diet says to, so I follow the foods listed on FODMAP and the IC diet. it is getting ridiculous because I recently had a IGG4 antigens test and I scored "severe" for milk, dairy and peanuts, and moderate for eggs. nothing left to eat! lol I have not been dx'd with IC but I dont know what else could be causing all these genito-urinary problems in me. the urologists haven't cured me yet thats for sure....

I didn't gain weight but became extremely sugar addicted. I would experience hypoglycemic like symptoms and wasn't able to function. I had a lot of GI problems from pseudo grains and rice. I think it all comes down to how your body feels. I lost a lot of weight following the paleo diet (didn't need to) but was able to control it by tweaking the diet a bit. There's a lot of bogus advice and scams out there, but I recommend for you to see what feels best. If you want to, look up mark's daily apple or paleohacks or just google paleo and primal diet. Some of these websites have a lot of info and it's FREE! I'll warn you though, be aware of the forums. There's lots of people there either who are extremely overweight and are trying to lose a lot of weight or they're fitness obsessed or they take the diet to the extreme and will advise you to do things like eat 1 lb of

ox tail at dinner or something like that. A lot of people will try to give you advise that don't know whack about celiac. Take it with a grain of salt and listen to your body.

yes I have been on the Daily apple forum and it was interesting. My nutritionist was talking about avoiding foods that ferment quickly in the gut and that are not absorbable and wind up going past the small intestine into the large colon and causing alot of havoc. It seems to make sense. it is called FODMAP, though I really cant pronounce what it stands for. if you google the low fodmap diet you will see the list of foods that are recommended. I guess it depends on each person and what works for them. I go through intense carb cravings as well, it is hard to break the carb cycle.

but I wonder if anyone has any info about what the guy on glutenfree society is saying that ALL grains have gluten, it seems like he is mis-using the term gluten and twisting it for his own benefit?

Thanks, ladies!!! Great advice!

I am 2 years into being gluten-free and I STILL have the dining out problem. I just don't trust anyone when they say they are being careful because in reality they are NOT a gluten-free kitchen. I feel safe in a PF changs because they have been doing gluten-free for a long time. I don't really have any answers about this except to speak up no matter what. I was glutened alot when I first got dx'd too.

my concern is that I am less sensitive now so if my body doesnt tell me right away that I ingested gluten, does that mean that I didn't ingest it? CC is a bad thing for us.

yeah doctors are clueless sometimes. I went to an endocrinologist in 2006 cause I knew something was wrong and I thought it was low testosterone. He basically ran some blood work and told me I was depressed. If he had checked my vitamin D back then my celiac might have been discovered perhaps 4 years earlier than it was. instead I wound up being given lexapro and xanax and what a night mare that was....

I have had IC symptoms lately as well. have you checked out the IC network for more info?

Is it the doctor from Texas who's a CHIROPRACTOR but making a name for himself with treating Celiac disease? The one who wants oodles of $ for you to sign up to "get more info" from his website? *sputter*

I'd say trust your body and its responses over what this guy says...if you don't have a problem tolerating gluten-free grains then don't worry about it.

yes there is a guy in Texas who charges 69.00 to join his web site plus 12.99 a month. Celiac has put a hole in my wallet as it is, so it kinda sticks in my craw that he would charge people who have suffered from celiac to gain access to his info. I am sure he is a nice guy and he seems sincere but to make a living off of people with a disease is beyond me.

I have been looking into the FODMAP diet which restricts carbs that ferment quickly in your gut. I haven't quite figured out what to eat yet as I gained alot of weight after going gluten free...

I am down now about 15 pounds trying to get back to a good weight for me.

did anyone else go from being really skinny before dx to gaining alot of weight?

Anyone here following the paleo/primal movement to manage their celiac? I find it easier to manage this disease being paleo. No grains so far has meant no contamination, no need for an additional toaster, more control of my blood sugar, and easier on my adrenals. The only hard part is figuring out the fat/protein/carb portions. I find that if i cut on carbs too much i lose wayyyy too much weight. Just wondering for how many of you this change in lifestyle had been helpful.

I just posted a new topic before seeing this one, sorry. If I go grain free where is my source of carbs? I hear that you need to have a certain amount of carbs, correct?

There is a guy on the internet who claims that ALL grains are problematic not just for people with celiac. I find this confusing because the major celiac docs do not suggest this. On top of it, this guy is charging ALOT of money to join his "society".

what gives with this. I get his free stuff and now I am afraid to eat rice or corn products which I do not have any problems with food allergy-wise.

anyone find that going completely grain free has helped them? He is claiming that people that do not go completely grain free will not heal completely...

If you get canker sores from being glutened:

1. How soon after a glutening do they usually appear?

And

2. How long after bring gluten-free did it take for them to completely go away?

I have been gluten-free for 4 months. I seem to get one canker sore a month. I always thought it was hormone related, but now that I've been tracking all my symptoms I see that it doesn't happen at the same time each cycle. I've had them ever since I was a child except for when I was pregnant both times. Trying to determine if they are a gluten reaction for me or not.

I suffered from horrible canker sores my whole life. about 10 years ago, I discovered that an ingredient in toothpaste called Sodium Lauryl Sulfate was in most toothpastes to make them foam up, however some people are sensitive to this irritant. in fact. this chemical is in many soap and shampoo products and causes skin irritation. Many canker sore sufferers are allergic to this

chemical.

I switched to Rembrandt canker sore tooth paste and my canker sores stopped almost completely or when I had a flare up they were not as bad. That toothpaste is expensive, but there are other commercial brands that are not as pricey that don't have SLS. They are hard to find, but I am also using the new sensodyne toothpaste and that is free of SLS as well. If you get a flare, your dentist should have an acid that he or she can apply topically to get rid of it or your doctor should have silver nitrite to burn them out as well.

hope this helps. I have been through horrible canker sores for years and I dont get them much any more. If you are getting gluten you will notice an up tick in their frequency so thats your indicator to check what you have been eating that might be the culprit of secret gluten.

Good timing with this post. I have been gluten-free for 10 months and have never had this symptom until this last week. I have had many bladder infections before but this was different. I have never had actual cramping in the bladder before and this time I did, and bad. I had a culture done and doc gave me a week of antibiotics. However, I am positive I did not have any gluten. I wonder if other foods can create the same reaction? Could just be this was anotehr bladder infection but it did not feel like the typical symptoms I normally have.

yes, I have been cramping in my bladder for months now. I am going for bladder re-training therapy and bio feedback. Its awful not to be able to drink a lot of water because my bladder just

freaks out. My pt said that almost half her bladder re-trainig patients have celiac!! I have bladder wall thickening and she said its probably collagen thats built up over the years from the constant inflammation from gluten. I have been gluten free for several years now, so I am beginning to suspect another intolerance like peanut butter and hummus, which I eat alot of both...

anyone with a peanut intolerance out there have bladder spasming issues???

Just wanted to pop in and add that my primary symptom of gluten exposure feels like a bladder infection, but may actually be interstitial cystitis that is aggravated by the gluten.

Tips for feeling better quick:

Steep some looseleaf nettle tea for 10 minutes, and drink up. I believe the antihistamine properties make me feel better within an hour. Linden tea is also quite nice.

A hot pad over the lower abdomen is lovely for the spasms. You might also try a castor oil pack, covered by the hot pad. I did this nightly for months, while drinking nettle tea, as I was getting better.

Also, check out Wendy Cohan's The Better Bladder Book, in which she draws a strong connection between gluten and bladder trouble. (Moderator, I'm not trying just to sell her book. She did save me, and my bladder, and the peeps here should know about it.)

You only get one bladder, be nice to it!

Just prior to my celiac dx I was running to the bathroom for both reasons. I seemed to have had the painful overactive and spasming bladder while having loose bowels. I had many scans and tests but the doctors did not tell me what was wrong with my bladder.

AFter seeing 3 urologists, the last one told me my bladder wall was thickened and since I had no infection it was non neurogenic neurogenic bladder voiding dysfunction.... huh? I seem to get relief when I take celebrex but I am worried about taking too much celebrex because I am still healing my gut. I have been gluten free for almost 2 years, so I am afraid that the damage has been done, now I just need to keep the symptoms from flaring up.

anyone out there have non neurogenic bladder?

Other then telling me I had celiacs and to go on a gluten free diet my doctor didn't say to do anything else. We live In a very rural area and the medical care is far from stellar. It took me over 2 years to get diagnosed, I asked numerous doctors if I should get tested and they said I didn't have any of the "right" symptoms even though I have 4 cousins who have it. Just kept wanting me to take narcotics for the pain which I flat out refused.

What are things I should be doing? Both for me and my child....

Thanks so much!

glad you were finally diagnosed (dx'd). I was dx'd in april 2010 and I had bone pain in my ribs, lumbar spine and hip and it turns out I had bone density loss in all of those areas. I would advise you find a GI doctor to test you for vitamin definciencies. If you are experiencing bone pain, I would recommend a bone density scan, but if that is not feasible then begin a regimen of vitamin D3 with calcium every day. Taking a good multivitamin is a good start as well. Just make sure its gluten free. many of the major brands are gluten free such as Nature Made

My brother had to lie to his doctor in order to have a celiac panel run and my sister's doctor told her it wasn't necessary because she didn't have diarrhea!!

Just curious, what kind of protein?? Protein powders often contain gluten, even if just CC'd. The "natural flavors" are really suspect. Also the plain soy can be dangerous if taken in excess. Too much estrogen plus it messes with cell proliferation.

mostly chicken, salmon, nuts and greek yogurt. I also sprinkle milled Chia seeds on my yogurt. I do use a protein powder occasionally - it's rice protein powder. I will check the container to see if its CGF, though I don't think it is. I don't drink it that often.

are there any protein powders that are certified gluten free?

Thank you everyone for the input! Today was my first day eating gluten-free and i didnt feel sick today. Hopefully a sign of good things to come.

I hope you heal faster than I have. Its taken me more than a year to settle down and I am dealing with the residual affects such as loss of bone density, reflux and a sluggish gall bladder... I am at least tolerant of dairy again after 18 mos gluten free.

I also have osteopenia, was taking a great deal of vitD but have recently been able to decrease. Are you getting a low acidic diet to regain growth in the bones? Read about it if you have not heard of it. Also, if your doc is recommending various prscripts to protect the bones be very wary and read on them as well. What happens with some, perhaps not I, is they will put a protective barrier around the bone to preserve what is there but it will not allow for new nutrients to penetrate the bone. When I was tolod this I refused any meds and I have been on a low acidic diet now for months in hopes of regaining.

no I have not heard a specific low acidic diet. I had a comprehensive nutritional evaluation done and my acidity/ph balance was on target, but not sure about low acidic foods.

I mostly eat protein, veggies, and some fruit, mostly melon, red grapes once in awhile, or pineapple for the bromelain content.

Just wnodering if you've had your vitamin D levels checked lately, or any other blood work up. (Mushroom is a whiz at telling you which ones you shoud request, btw.)

yes, I am waiting for my lab results now. My last vitamin D reading was 25,which was down from the previous reading of 52. I am taking vit D2 50,000 IU's a week for now. My recent dexa scan showed slight improvement but I have Osteopenia