Newbie With Lots Of Questions

[silk]

Hi everyone.

I'm new to the sight and want to say what a God send it is and how much it has helped me already just by knowing that there are many people in the world with similar symptoms who have struggled with finding the answers. It makes you feel not quite so alone. Honestly, I am feeling like my Dr., who prior to this stuff I think had much respect for me based on my diabetic control, is now beginning to think I am a hypochondriac and I am just getting started with the testing. Sounds like some of you have been at this for years..

I am a 48 year old type 1 diabetic. It is very well controlled through diet and exercise. I have suffered from low-back and hip pain for years but it has really become an ugly monster in the past couple of years. I work for a chiropractor so he has helped with managing the back and hip problem within the limits of what he is able to do. A recent trip to the Ortho revealed nothing alarming. Just the onset of Osteoarthritis and he based that on age and the fact that I am a fairly avid exerciser. X-rays revealed nothing. Ive had mysterious fractures in my feet over the past couple of years that occurred without any apparent traumatic injury. Also suffering from what I suspect is carpel tunnel but again...sick of Dr's and not willing to pursue it right now with everything else that is going on so I wear a brace when I am at work, which seems to help.

I have suffered from stomach problems since I was a child. Can remember watching the moon-walk while lying on the floor in a fetal position in the middle of the night. As a child, things like hot-dogs, sausage, whipped topping and twinkies would all just kill my stomach. Mom just though I was being picky! As I have said, I have always had a tricky gut but in the past couple of years the problems seems to have increased. Most notedly was the cramping, bloated-oh-my-god-I'm-going-to-explode! feeling and geez, but the rumbles in my lower intestines sounded like I was really being rude and I wasn't. Also, suffered from a gnawing gut ache in the pit of my stomach and it seemed to really hurt right after I ate and then again when I was hungry. Also hurt when I drank anything and the funny thing is is that my husband has laughed at me for years because I don't drink tap water very often because I tell him it makes my stomach hurt.

I also suffer from frequent bouts of nausea and constipation. At first I thought I was dealing with a bad gallbladder but a recent ultrasound and a CAT scan last week only showed that I had a second spleen! Everything else looked good. I know that these two test are not conclusive, but I guess I was more happy to hear what was not there, which was cancer.

Anyway, I started to follow a gallbladder diet in June when I really thought it was the GB, and since breads and wheats are one of the things they recommend you avoid, of course my symptoms alleviated a bit. I picked up Dr. Oz's book called"YOU on a Diet" and it mentioned that artificial sweeteners can cause stomach distress, and of course, I looked it up on the trusty internet and yes, those symptoms followed mine as well, sooooo. I excluded all artificial sweeteners from my diet and that seemed to help for a while too so I discontinued the GB friendly diet thinking that I had had an "AHA" moment with the artificial sweeteners. The book also recommended certain foods to balance out your system and really promotes whole grained goodness so I went heavily into cracked bulgar wheat for breakfast. Even ate it for lunch and dinner some days because I really liked it. Everything was whole-grained and my cholesterol count at my check-up in Sept was 139! Dr. was really happy with me for those numbers but Wow! the stomach symptoms really started kicking up and my stomach/intestines were not just making music but had become a full-blown orchestra! And the constipation was surprisingly awful considering all of the whole-grained stuff I was eating. Chased that problem with Psyllium which did help.

So off I traipsed to the M.D. and he ordered the tests listed above. Also of note was that while I control my diet pretty well, I gained 6 pounds in a two-month period! I was aware that it was happening and puzzled at what I was doing wrong as I was excercising my butt off and controlling my meal portions. Walk anywhere from 3-5 miles a day 4-5 times a week and lift weights!

After telling me the results of my first test and ordering a CAT Scan, he mentioned in passing that the next step would be to test for things like sprue(sp) and gastritis. Well of course, I came back to the internet and found you guys and gosh...I am astounded at how many symptoms we share and that when I look at my family history of heart disease, stomach problems arthritis, depression.....geez! So after reading the stuff here I went off of gluten last Thursday and although I still have some discomfort (like now) it is not the constant gnawing pain that I had before and my tummy is QUIET! Yay!

So my questions are:

I got the all clear from the CAT today but the Dr. wanted to order a ?Peptoscan???? to check the gallbladder function and I said no. First the ultrasound showed that it was normal, as did the CAT scan, so if the pepto thingy is negative too, then we go on to more testing...No thanks. Am I making a huge mistake here or do you think that the fact that things are already improved, though not 100%, that it is enough to follow the gluten free diet for a couple of months and see what happens?

Also, mentioned several times were the aching joints and pain...I'm curious to know from some of you 'veterans' if those symptoms ever became better after being gluten free for a period of time? And what about other conditions that are caused by Celiac's? Do they improve or disappear as well?

Does anyone know if the Psyllium is a problem. I checked and it does not seem to be connected to a wheat product but says that it is simply the husk of a seed but I'm not sure????

I can see that eating the gluten-free breads and cakes is going to be a challenge. Because these are not whole-grain complex carbs, their glycemic index is through the roof so controlling blood sugar is going to be a challenge if I eat them very often. Case in point, my BS was 108 when I went to bed lastnight. Had made my first loaf of gluten-free pumpkin bread for the holiday and wanted to taste it before serving it to my family (yummy stuff. Everyone said better than the regular stuff!) I did this probably 1 1/2 before I tested my BS so it should have peaked by then.. Not so. I was at 140 this a.m. Questions is..are there other diabetics out there and how do you deal with this particular challenge because the carb content on the gluten free stuff is definitely higher and with very little fiber or protein to help balance out the glycemic load.

Last question...I swear...for now anyway...Because the Dr. also mentioned the possibility of gastritis, I started taking Prilosec about 4 days ago...is this a problem? not recommended?////can't say that I feel like it's doing miracles but it's also pretty early to tell. But if that was the problem, then would I still be having pain? and does anyone else use anything for the discomfort? I have also been using chewable rolaids when I am symptomatic which seems to happen mostly after eating and it does seem to help a bit.

Also notice that when I am most uncomfortable with the stomach pain and bloating that my waistband becomes really uncomfortable when I sit. No, my pants are not too tight because I have also had this happen at times (the belching and pain) when I am wearing a nightgown or dress, but I just seem to be more aware of the waistband and belching seems to be more frequent when I sit and better when I stand. Anyone else deal with this. And is there some physical explanation for it?

Also, is there a generalized list somewhere (oops sorry I lied about it being the last one didn't I?) of things that contain gluten. There are many things that are obvious, but over the counter meds like tylenol, etc....there is nothing listed and if it is listed by a name that is unrecognizable, well, I don't want to be sabotaging myself...I did find a good cookbook that is fairly straight-forward with many of the things I like to cook and I am quite sure I will not starve but as I said...eating out and taking meds could be like fielding your way through a land-mine.

I look forward to hearing back from you and would like to thank all of you in advance for your input. It really helps when you don't feel like you are alone.

[missy'smom]

Welcome.

If you look above you'll see "Celiac Disease Info.. Click on it and then the next page will have a green box on the left. In that box there is a place to click for lists of safe and unsafe ingredients. There are some lists out there that list specific products but it is still important to double check labels, verify info for yourself and occasionally look for update lists as the formulations of products can change from time to time. They can be useful as a starting or reference point though. Kraft is a company that will list all gluten on their labels-even barley containing ingredients(they will clearly write"barley"), which helps eliminate some of the detective work.

[aikiducky]

One quick thing: You need to know that if you ever want to have an official diagnosis of celiac, you shouldn't go gluten free before all the testing is done. Otherwise you start to heal which might make the tests come back a false negative.

Pauliina

[hathor]

Hi and welcome! I'm sure you will here from people who can tell you about Type 1 diabetes, etc. I'll just hit on the subjects where I have something to say.

If you want to have traditional testing for celiac, you have to be eating gluten. If you don't want to go back on gluten (true for many of us who tried gluten-free as an experiment and didn't want to go back), you can go with Enterolab. This test will show gluten intolerance, but not definitively celiac. However, if you can't eat gluten, ever, I don't know if the practical label is that important.

One thing that Enterolabs tests for is fat malabsorption. I think that problem could account for symptoms similar to gall bladder problems. I know I thought I had gall bladder problems for years, but the tests never showed anything.

Psyllium would be fine.

I've found that if you google on the name of a product plus the word "gluten" you can usually find some post or list that will tell you if something is gluten-free. If that doesn't work, check the manufacturer's website. If still no answer, contact the manufacturer. Of course, first look at the ingredients and see if anything is questionable. (The latter works for food, not for supplements and medicines. They don't have the same ingredient labeling reg's.) There are lists you can buy of acceptable/not acceptable products, but I don't know how complete they are or if they are up-to-date (things change). When I first started out I bought some lists. But I don't really use them at all. Maybe I don't eat enough mainstream brands and products

For instance, I just did that with "Rolaids" and it looks like some of them DO contain gluten --

Open Original Shared Link

Here is a partial list of products I found from googling just now:

Open Original Shared Link

Do not feel you have to give up whole grains completely. You can have rice, wild rice, buckwheat, quinoa, millet, amaranth, corn ... If you need to up your fiber intake, look at lists of high fiber vegetables, legumes, nuts & seeds also. I won't recommend anything in particular because I don't know about the specific needs of a Type 1 diabetic diet.

Can you take magnesium supplements? Those of us who tend to the constipation side of things here find it can be useful. Also, I remember seeing a study that shows that the bone density of celiacs just going on a gluten-free diet was significantly higher in the group that took such supplements.

I also have an incredibly talkative stomach and what seems to be the beginnings of carpal tunnel. This latter is probably because I spend so much time on this forum

I wouldn't accept a diagnosis of osteoarthritis as something that just happens with your age and the fact you exercise. Exercise should help. And heck, I'm 6 years older than you are and apparently not in as much pain, particularly when I do exercise. Do you do anything specifically for stretching/strengthening where you hurt? You may find Egoscue's Pain Free books to be useful. His idea is that a lot of the pain we experience comes from poor posture/positioning and weak muscles. He hasspecific exercises for different joints.

The broken bones without cause may be osteoporosis. Have you been scanned?

[cyberprof]

Like Hathor, I won't comment on what I don't know, hopefully others will chime in.

Yes, some of the gluten free recipes have no fiber and are very much filled with refined carbs, which would mess up most people's sugar levels, especially diabetics. Whenever I bake gluten free, I add ground flax meal or ground almonds to replace flour. The almond meal bag I have says that you can use almond meal for up to half of the flour. I also hate using just white rice flour, so I use sorghum and teff flour too- they have more protein and fiber than some. I have a kids cookbook that has diabetic adjustments. "Wheat-Free, Gluten-Free for kids and Busy Adults" by Connie Sarros.

I would suggest, though, if you get diagnosed or decide to go gluten free, that you NOT eat replacement breads etc until 6 months or more after you start the diet and are healed. Especially being diabetic. You may want to do the Paleo diet for a while.

Pre-celiac diagnosis, I had joint pain in my hips, low back, knees and ankles and I took ibuprofen 2-4x a day to manage the pain. I had most of the pain since I was 17 (30 years) Just about a week into gluten free, my pain went away and I rarely take ibuprofen for pain. I hope you are lucky and yours goes away soon.

My stomach noises and rumbles could be heard across a room. And the waistband and stomach pain while sitting were unbearable. Now I only get that stuff when I get gluten by accident now. I also endorse eating more small meals, because lots of food is hard on my system.

I second the suggestion to get a dexa bone scan- I'm surprised your doctor didn't order it when you got broken bones for little/no reason/injury. I just had a dexa scan and I have osteopenia, which is the precursor to osteoporosis. Since mine is mild I don't need drugs, just gluten-free diet, vitamin d and calcium supplements.

I tried Prilosec and it didn't help. You may find that you don't need it if you go gluten free.

[silk]

Wow! First I would like to thank all of you who responded for having the patience to read what I wrote. I did not realize it was soooo long. Guess I was on a roll. Secondly, I was so overwhelmed at what you all shared with me. These symptoms that I have had for years....and there are others...and I am not alone...and I finally have answers!

I don't intend to go for formal testing or DX. Don't want to put myself through that again and is there any specific reason why I would need to have a formal diagnosis that I am not aware of? If there is, please let me know.

So appreciated the list of safe/bad products, the recommendations for supplements, etc., and the info on the Rolaids...well lets just say that I was pretty much miserable yesterday and kept popping those chewy little cherry rolaids all afternoon and I wasn't feeling any better and NOW I know why. I can see that I have a long road ahead, but at least I have good support on the home front and a really good source of information and support here. I have passed on the message to my older daughters about this being genetic and will pass it on to my older brother and my dad, who both have lived with stomach troubles for years. My brother was just diagnosed as bipolar so this should be of interest to him and his wife.

Just curious though, Hathor, you mentioned that I should not use replacement breads for a while. Would this also include gluten free cereals and cakes? Can you tell me why? I can understand why I might not want to use premade stuff, aside from the fact that it tastes horrible because you can't be sure of the processing. I made more holiday bread and a delicious white bread last night from my new cookbook. Would those be a problem? I seem to be balancing better with the BS now that I am getting the hang of things. This mornings was fine. I take a fast acting insulin before eating so as long as I know about how many carbs I am consuming, I can adjust my insulin accordingly. Definitely doing the brown rice and graze on fresh fruits and nuts as a mid-meal snack for the diabetes so that's not a problem. As I said before, diet restrictions are not new for me, just different.

You also mentioned testing through Enterolab. Is this something I would need to do through my Dr. ? What does the testing involve and is it something that is covered by insurance ?

And thank you also for sharing your experience with the noisy tummy and the waistband issue. It does seem to be better today and glad again, that I am not just imagining these things.

You guys are great and I am so glad that I happened upon this website. Have a happy thanksgiving!

[hathor]

...I don't intend to go for formal testing or DX. Don't want to put myself through that again and is there any specific reason why I would need to have a formal diagnosis that I am not aware of? If there is, please let me know.

...

Just curious though, Hathor, you mentioned that I should not use replacement breads for a while.

...

You also mentioned testing through Enterolab. Is this something I would need to do through my Dr. ? What does the testing involve and is it something that is covered by insurance ?

And thank you also for sharing your experience with the noisy tummy and the waistband issue. It does seem to be better today and glad again, that I am not just imagining these things.

...

I can only see three reasons for a formal diagnosis -- you are in a country where you get compensation being an official celiac, you need an accommodation from an institution or company that you won't get without an official diagnosis, or you won't stick with the diet (or will take a lot of flak for doing so) without one. Maybe there are others, but they don't occur to me.

The replacement bread and waistband points were made by Cyberprof, not me.

No, you can do Enterolab by yourself. You order the tests on line, they send a kit to you, you do your business in the provided bowl, put the lid on and tape it up, put it in a zip lock bag, freeze, put the entire thing in another bag they provide, and then put that in a box they give you. The UPS label is made up for you and the charges are already paid; you just have to drop it off. In about 2 to 3 weeks, they email you with the results. If you get the genetic test, you swab the inside of your cheeks with the swabs provided, put them in an envelope (I think it was) and then put that in the larger bag with your stool sample.

I always wonder if UPS has any idea what they are transporting. I mean this isn't a tiny little smear ... it is an entire BM. Someone on another thread mentioned that Enterolab maintains the samples for six months also. The mind boggles. I assume they have extensive refrigeration facilities and some back up power

A few people have mentioned getting their insurance company to pay but I think this might have been in circumstances where a doctor orders the test. Mostly people don't.

[silk]

Hathor said: "I always wonder if UPS has any idea what they are transporting. I mean this isn't a tiny little smear ... it is an entire BM. Someone on another thread mentioned that Enterolab maintains the samples for six months also. The mind boggles. I assume they have extensive refrigeration facilities and some back up power "

Too funny! I would be curious to know how the classified ads for that job description would read?....

..."must be able to resist the temptation to peek inside of unmarked packages and have no sense of smell" Wonder what that would pay an hour? And if the working conditions are good or just plain **appy!

Sorry for my error in giving credit to the wrong advisor. Thanks for your help cyberprof.

I am truly celebrating today. Thanksgiving has come and gone and my stomach does not hurt! I ate reasonable amounts of everything I wanted (within my limits of course) but I went away feeling satisfied and undeprived and I don't have a gut ache to show for the day! Even made gluten-free stuffing with brown rice bread and it was hardly recognizable as being different from the regular stuff and delicious.

I have also taken the time to look at more of the labels of things that I had been using in the past few weeks, thinking that I was eating healthy. I was taking dried apricots and apple slices to work because they store well and are yummy and full of fiber and eating them with my raw almonds for my snack every day, morning and mid afternoon. Always had a terrible stomach ache by lunchtime and again before I went home from work with the noisiest stomach ever. I discovered this evening that both of those products are processed in a factory that also processes wheat! I was shocked and again had the aha moment of why, when I thought I was eating well and doing something healthy and right for my body, that my stomach would continue to hurt me so much.

It makes me very sad for those who are not aware and who suffer needlessly. Spoke to my Father today who also has terrible problems with his stomach and constipation and has had all of his life. My experience was a huge eye-opener for him and for my stepmother, who I am sure will make him pursue this. He also noted that my grandfather would never eat white bread because it made his stomach hurt. Told Dad that when I said I wanted to inherit a little something someday, that THIS was not it.

Again, thanks to all for listening and for the words of wisdom. Hope you all (if you celebrate the holiday where you are at anyway) have a very happy and safe Thanksgiving.