New2Celiac

[new2celiac2k12]

Hello, this is my first post,

I recently was tested positive for celiac through a blood test, not sure which test, but my family doctor was explaining it to me, and he was stuttering trying to explain how the test was done, but the number was very low where I was border line, I'm a 40 year old male, youngest of 3 boys, and no one in my family has had any serious health issues ( mother, father, and 2 older brothers ), other than my grandfather had prostrate cancer in 1969, died just before I was born, and my grandmother lived another 40 years, she died at 93, mostly from diabetes, but the only close issue is my mother has Hemochromotosis ( Iron Overload ) and has been going through that for 2 to 3 years.

Last week I had an alergy test done, and I was told I'm alergic to grains, wheat and milk, for the past 2 weeks I've been gluten free, getting use to Chex gluten free cereal and Kirklands Soy vanilla milk, this Friday I'm going in and having endoscopy biopsy test done to confirm.

For now, the severe diarrhea has stopped, and getting back to normal, but I have some severe mid to lower back pain, I've seen a chiropractor 3 times, and he did some adjustments each time, but he has not taken any x-rays, MRI, or cat scans, of which I had asked both my family doctor and the chiropractor to have this done, but they both are treating me with more of a stress or anxiety, rather doing the scans, I can tolerate the diarrhea, but the back pain has been so severe where I can't barely walk, and I have all this pain being 100 percent gluten free, after reading many posts here with many different experiences of pain, especially if our small intestines are damaged and trying to repair & heal, but this back pain is almost bed ridden me...

I've very grateful for finding this web site, and for everyone's support for helping people with this condition! Thanks.

[Kamma]

Morning, new2celiack12, and welcome.

Concerning the back pain, do you do any kind of daily stretching? I know when I was at my sickest and moving less and less, my back hurt more and more.

[gluten free overseas]

So sorry to hear that you are going through that! Many people complain of back pain during recovery. Also, soy gives me a lot of pain in my joints--just make sure you don't have other food sensitivities.

If you use the search space up to the right, you can get so much useful information--everything from people's favorite gluten free food brands to what people do to help them sort out problems. I bake with coconut milk instead of dairy milk--it works great. A lot of people have posted suggestions for how to navigate a gluten and dairy free diet.

I know that it took me a few months before I started feeling a huge difference in my health. It might take a while to really recover. There are a lot of discouraging moments in the beginning, but it's worth it.

[frieze]

Hello, this is my first post,

and my grandmother lived another 40 years, she died at 93, mostly from diabetes, but the only close issue is my mother has Hemochromotosis ( Iron Overload ) and has been going through that for 2 to 3 years.

Last week I had an alergy test done, and I was told I'm alergic to grains, wheat and milk, for the past 2 weeks I've been gluten free, getting use to Chex gluten free cereal and Kirklands Soy vanilla milk, this Friday I'm going in and having endoscopy biopsy test done to confirm.

For now, the severe diarrhea has stopped, and getting back to normal, but I have some severe mid to lower back pain, I've seen a chiropractor 3 times, and he did some adjustments each time, but he has not taken any x-rays, MRI, or cat scans, of which I had asked both my family doctor and the chiropractor to have this done, but they both are treating me with more of a stress or anxiety, rather doing the scans, I can tolerate the diarrhea, but the back pain has been so severe where I can't barely walk, and I have all this pain being 100 percent gluten free, after reading many posts here with many different experiences of pain, especially if our small intestines are damaged and trying to repair & heal, but this back pain is almost bed ridden me...

I've very grateful for finding this web site, and for everyone's support for helping people with this condition! Thanks.

NOOOO!...going gluten free almost three weeks you are running a good chance of negative scope!

[new2celiac2k12]

Thanks for the reply's!

I have been using my weights, and stretching as much as I can, I originally went to the doctor a week before christmas (12-20-11) , and I was having serious to severe back pain then, my appointment was for the back pain, but somehow we started talking about still having issues with diarrhea ( mostly due to fatty foods like happy hour foods ), he then shook his head looking through my health history of being diagnosed with IBS for like 10 years but not one single alergy test was done, that's 4 to 5 doctors over 10 years, not making any special appointment for food allergies, and then this current doctor I saw went directly to doing blood tests to rush to diagnose, rather me waiting a month to have alergy testing done, and a month to do anything for my severe back pain.

So today I stayed home from work, which is difficult, I stand all day ( I work as a mold maker and use very large machines to produce machined parts ), and I usually work 9 to 10 hrs day, and it's a job where we have to move on a vigorous pace, where it's getting difficult to work, and stay focused, and have the best concentration, but I have a demanding job, where were under pressure for getting jobs done quickly and accurately, with-in time lines, but I had so much pain in the middle of my back yesterday and today, I called the phone nurse today and waited several hours, my doctor gave me some pain meds for the pain, but he wants to see me for the back pain, of which he originally recommended me to see a chiropractor for my pain back a month ago, and I been to the chiropractor 3 times, and had at least 4 to 6 adjustments each time being there, but no x-rays, MRI or cat scans were done to make sure there was anything wrong ( dics or something similar ) in the first place, and my family doctor was a little upset as when I said my chiropractor told me he thought all my pain was from my gallbladder, so I've had one heck of an issue dealing with two docs that don't agree with each other, and ego's are getting in the way.

From my previous post, I may not have been 100 percent correct as being totally gluten free, I did have some food that may have had gluten in it, which may have brought on this pain, I made an appointment for Thursday with my family doctor for the back pain, but Friday at 2:00 I'm having my endoscopy biopsy done, so I don't know what condition my back pain will be for the procedure, but I need to get it done for confirmation.

For now, it's gluten free Honey Nut Chex, with Kirklands soymilk, which is refreshing, been eating turkey burgers, salmon burgers and baked chicken breast from costco with yellow corn tortia's, and making lot's of broccoli, cauliflower, carrots, and eating strawberries, sliced apples, and getting use to the change, my bowel movements are back to perfect, but back pain is getting very old with it's severity. Thanks!

[Kamma]

Yikes! You have a physically demanding job! No wonder your poor back is hurting in addition to whatever other nutritional stresses you're going through. It totally makes sense to keep pushing for the MRI/Cat scans as you might have a problem that is exacerbated by the physical demands. I wish your doctors would get on board with that asap. It might help to let them know it is interfering with your ability to go to work if you haven't done so already. I don't understand why they're dragging their heels on this. It must drive you insane cause back problems are NOT any fun.

If you don't have any issues with yoga, here is a short video specifically showing poses that help and prevent lower back pain. It might be beneficial to include them in your exercise routine. By the way? They really do help.

[new2celiac2k12]

Well, Biopsy tests last Friday were confirmed positive!

I have been seeing a chiropractor for my mid to lower back pain, I've been out of work since last tuesday 1-24-12, and I was in so much back pain that I almost had to call an ambulance, but somehow was able to just deal with the pain, and my chiropractor sent me to get some x-rays done, that did show some disc degenerative disease, also showed some abnormal curvatures of the spine, of which those area's showed bone spurs, but this finding was nothing serious as per my chiropractor's concern, he tells me with me doing a-lot of construction type of activity and my age, this was normal and is treatable. I can add that I have had issues with teeth enamel ( over a year ago, of which was a hidden negative because of moderate soda pop drinking and problems with decay )

It's been a blessing finding this web site and support forum, and to find such invaluable information here, is what helped me with feeling much better before the biopsy tests were even performed, the gastroenterologist was upset with me as he asked just before performing the endoscopy, if I was still eating gluten, I said I changed my diet because the diarrhea and gastro issues were so bad, I had to, and his frustration was in his tone of voice, but I said, one week would not affect this outcome, as I stated to him, if it takes several months to 6 months to a year for our bodies to be normal, celiac should still be evident, so I told him to just put your self in my shoes and you deal with the severe diarrhea, and get back to me, and then he backed off, and then the biopsy procedure was under way, of which I was totally asleep, had some issues swallowing the tube down, but never woke up during, and woke up in recovery, no issues other than I tried going to a restaurant to eat from my 15 hrs of fasting, I wanted food, but was dizzy and still grogy, I ended up going home and just laying down.

I believe the gastro doctor that performed the procedure stated something regarding Esophagitis, I have to go back and have the endoscopy done again in 2 months to check it's condition.

For now I'm grateful for Chex Gluten Free cereal and Kirklands Soy vanilla milk, I've been making turkey burgers, salmon burgers, and regular hand burgers with yellow corn tortilla's, eating more fruit, and lot's of vegetables, broccoli, cauliflower, carrots, etc, so the change of feeling better has been night and day, also Davannis Pizza makes Gluten free pizza, and that has been a treat, the pizza is much smaller and a little expensive, but I'm able to satisfy my craving for pizza, not quite so much as before, but mostly a treat from time to time.

My only real answers that I found out about the food allergies was through my chiropractor, I took a allergy test at my local doctor clinic, that was a total JOKE, they pricked my back with 50 to 60 different types and not one was reactive, I reacted to Histamine, but the test showed no lactose intolerance ( since it's a reaction to the sugars and not an elergy? ) and even with wheat and gluten showed nothing, but it's a reaction to those things rather than an alergy, so I was really grateful for my chiropractors different way of his techniques that truly showed what to stay away from, thanks for everyone's help and support.

[new2celiac2k12]

Getting worse:

As of 10 days ago, I was doing better, but after I had a serious episode of serious vomiting for several hours, my stomach has really went into decline as with eating gluten free, lactose free, and still having regular diarea , I have serious pain on the left side of my stomach at my belt line, this pain has been persistent for two plus weeks now.

I've had several episodes of vomiting eating different foods, just recently as last Monday eve, I barbecued some sirloin steak ( no seasoning on either ), and some pork chops, and I had a baked potato with asparagus, and a few hours later, gone.

Two weeks ago my doctor gave me Colestryramine power, which did seem to help with getting regular, but I only took a few times, to see if my system would keep it going on it's own, but it goes back to floating diarrhoea, I did not know if I should take the Colestrymine powder for a long period of time, since reading mostly people with Crohnes are taking Colestrymine powder.

Last Friday I went to my family doc, and I waited for 43 minutes for him to show, and he listened to what my concerns were, he took an EKG of my heart from chest pain, he then wanted to consider me taking something for anxiety, Amitriptyline, which I was suprised for him to go this route, as I have not had any stool tests, or MRI or CT cat scans to show anything else bad is going on, but it was easier for my doc to tell me to try the Anxiety pills, rather more testing for concrete info.

Anxiety may be an added part of this as I do work a very stressful, demanding job, which has already shown up in my performance review, where just 2 years ago, I was an excellent addition to my department, now I'm not keeping up with everyone, and now our area is looking to eliminate 350 jobs, so as for the job's sake it's not looking very positive but I'm not very confident that my doctor has any experience with Celiac, as I don't know why a MRI or Cat-scan has not been recommended to show my system is perfectly normal, or to eliminate any bacterial infections.

Any suggestions would be greatly appreciated, thanks!

[new2celiac2k12]

New Update:

Well I thought I was doing better going gluten-free, was doing pretty good, but still getting glutened some times, and it takes so long to recover, I would have to use cholestramine powder pack with water, and it would clear it up after a day or so.

Three weeks ago, I've had my world get more up side down, my uncle passed away, and then the next following week, I was given a lay-off notice from my job, never have I been out of a job in over 20 years, and, wham, no more job, at least I was given 2 months with pay and benefits to find a job, which has been real difficult, send our a ton of resumes and no call backs, and after my 2 months is up I will have to pay half of cobra and rely on unemployment, which is going to be difficult when there is only so much with unemployment, and I'm even more worried that I will have to go through the probation period again, where I'm having a hard time trying to work as it is, where I may not make it at the same level I was at before, talk about frustrating, and demoralising. My job could have given me more warning to pre-pare, so I could have taken care of some debt consolidation from my house being repaired from water damage previously, and I had to charge the materials in order to finish up the job, and now I can't get a loan cause they can't verify job employment, talk about bad....

Here is where I really need some suggestions:

Today I went and saw a psychiatrist since after my family doc recommended me to go, and try Amitriptyline, to help calm down the gut, after taking it for 3 weeks, I've seen no improvement, and now the same psychiatrist want's to try something else.

My issue here is my chiropractor told me I had gal bladder issues, but my family doctor does not agree, once I said chiropractor, my fam doc took that as an insult, but the celiac specialist I saw, said, maybe you do need enzymes to help with your gal bladder, from what I've heard about Amitriptyline can cause serious GI issues just using it.

Sounds like I need to possibly get a second opinion? I may need to ask my doctor about some form dissibility, as I don't have much to fall on for money. Oh what a wonderful year 2012 has been. Thx....

[MitziG]

I am so sorry to hear of your troubles.

I think a new dr is in order, one who DOES understand celiac. Very likely your digestive bacteria can be out of balance when you first cut out gluten, dairy or other inflammatory foods.

I was given some good advice here recently to try the paleo/primal diet to sort out my own digestive issues, and it has made a HUGE difference. Anytime I eat anything not 100% paleo/primal now my stomach and intestines let me know immediately!

Your gallbladder is a likely culprit, but don't be in a hurry to have it removed. Sometimes being gluten-free for awhile can reverse the damage. Sometimes the gallbladder is just seriously inflamed from gluten and so its functioning is impaired. Remove inflammatory foods from your diet for awhile and the inflammation resolves.

[MitziG]

Sorry, post got cut off. I notice you mentioned you were allergic to milk, but then said you were eating lactose free.

Lactose free is not the same as being "milk free"

Lactose is milk-sugar. Lactase is the enzyme your body needs to digest it.

Celiac can cause lactose intolerance, where the villi can not produce the enzyme lacTASE break down the lacTOSE, so if lactose is your problem, then eing lactose free will help.

However, if you are actually allergic to, or intolerant of milk itself, then being lactose free is not going to help. You need to remove all traces of milk and milk protein from your diet. Milk protein, casein, is in many, many processed foods. Possibly Chex- I don't have a box here to check, but it is common in any type of baked goods. Fortunately, manufactures are required to list of a product contains milk, unlike gluten. Start checking your labels for milk.

Many celiacs are casein intolerant, and the digestive issues you describe would fit. As for vomiting no matter what you eat- you could be having a delayed reaction to gluten or casein, or it could be your constipation is severe enough to cause a blockage, which would also cause vomiting. The second is pretty unlikely though, as usually by then you would be in the ER!

So, try removing all milk sources from your diet, not just lactose. You may see a big difference!

[new2celiac2k12]

Sorry, post got cut off. I notice you mentioned you were allergic to milk, but then said you were eating lactose free.

Lactose free is not the same as being "milk free"

Lactose is milk-sugar. Lactase is the enzyme your body needs to digest it.

Celiac can cause lactose intolerance, where the villi can not produce the enzyme lacTASE break down the lacTOSE, so if lactose is your problem, then eing lactose free will help.

However, if you are actually allergic to, or intolerant of milk itself, then being lactose free is not going to help. You need to remove all traces of milk and milk protein from your diet. Milk protein, casein, is in many, many processed foods. Possibly Chex- I don't have a box here to check, but it is common in any type of baked goods. Fortunately, manufactures are required to list of a product contains milk, unlike gluten. Start checking your labels for milk.

Many celiacs are casein intolerant, and the digestive issues you describe would fit. As for vomiting no matter what you eat- you could be having a delayed reaction to gluten or casein, or it could be your constipation is severe enough to cause a blockage, which would also cause vomiting. The second is pretty unlikely though, as usually by then you would be in the ER!

So, try removing all milk sources from your diet, not just lactose. You may see a big difference!

Mitzi, thank you so much for your reply!!

When I saw my chiropractor for food sensitivity testing, he told me to take a lactase tablet as milk was my biggest weakness, next to grains, I had some weakness to wheat, but he said I had some defence to it.

When I had allergy testing at my local docor's office, my back was pricked over 60 different kinds of foods, and all was negative except histamine, which was normal, it was reactions / intolerance rather anything allergic.

I was drinking Costco's soy milk, lactose free, gluten free, and it seemed to be ok with Chex cerial, eating turkey, chicken, and lot's of ham, I'd say 1/2 from pork chops barbecued, and other part sandwich meat and breakfast ham that all says gluten free, I will change to rice milk, and see how that goes, as my chiro pract said to me that milk was my biggest weakness.

I guess I posted this wrong before, but I am taking a Lactase enzyme tablet when eating anything with milk, but not exactly 100 percent of the time.

I will start reading labels more, the other element I was having, the GI found two ulcers in the esophagus tube just before the stomach, and prescribed me omeprazole, to reduce acid reflux.

This is such a bummer when doctors want to only treat people with mental drugs, rather getting down to really helping people, how to read labels and know exactly what they mean, rather than they put their hands up and say, I'm stuck, I don't know what else I can do for you, and just shove pills down and think it's a magic solution.

Does anyone know of or heard about any success with digestive enzymes that help with breaking down gluten and casein in dairy products? I found several below that I am going to try, the ones at Swanson have many reviews of people with gluten / wheat / grain intolerance, and they help greatly:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

[new2celiac2k12]

I also forgot to add, that I can eat cheese and some brand of summer sausage that is MN made, gluten free, pork baseed ) and have no issues with them, I'm wondering with the milk ingredients in cheese?

I've gone to subway and eaten a chicken breast salad, and I use to get the ranch dressing, but lately just get most of the vegies, lettuce, cucumber, pickles, black olives, green pepers, mild onion, but no dressing.

I think I will have to consider soy to stay away from too. Thanks.

[squirmingitch]

You are playing with fire eating things from places like Subway. You need to learn about cross contamination. You can get glutened easily that way.

[MitziG]

The enzymes can help relieve the discomfort a bit I have found- I use Gluten Relief and noticed a difference. Apple cider vinegar actually works better and faster though-like within seconds! It is important that you understand aything that relieves symptoms does not mke it ok to indulge in gluten! Damage will still be done, you just might not have diarrhea or vomiting is all.

I think you definitely need to go casein free for now. Lactose intolerance is a whole other ball game, and if he tested you for a "weakness" to milk, then taking Lactaid is not going to do much good. Casein intolerance is very common with celiac disease as the protein structure is very similar to gliadin, and the body can mistake one for the other.

Also, until you are on the mend, avoid eating out altogether. It is always risky business anyway, but you are so sick now you have no way of knowing if it is from what or where you are eating!

There is a definite learning curve with the gluten-free diet, so don't be discouraged. It takes everyone a little time to learn the ropes!

[new2celiac2k12]

The enzymes can help relieve the discomfort a bit I have found- I use Gluten Relief and noticed a difference. Apple cider vinegar actually works better and faster though-like within seconds! It is important that you understand aything that relieves symptoms does not mke it ok to indulge in gluten! Damage will still be done, you just might not have diarrhea or vomiting is all.

I think you definitely need to go casein free for now. Lactose intolerance is a whole other ball game, and if he tested you for a "weakness" to milk, then taking Lactaid is not going to do much good. Casein intolerance is very common with celiac disease as the protein structure is very similar to gliadin, and the body can mistake one for the other.

Also, until you are on the mend, avoid eating out altogether. It is always risky business anyway, but you are so sick now you have no way of knowing if it is from what or where you are eating!

There is a definite learning curve with the gluten-free diet, so don't be discouraged. It takes everyone a little time to learn the ropes!

I forgot to post about my vomiting episode:

When I had this episode, it was when I was really sick in January, just after my biopsy for verification of celiac, and my family doctor was convinced I had a touch of the flu, I have not ever had such an episode of vomiting since, only 1 time, eating sirloin steak, not even seasoned.

I'm only looking for the enzymes to help with the discomfort and digestion, not to indulge in any way with anything with gluten, as far as I'm concerned, I ahve stayed away from anything that mostly contains any amount of gluten, it may be just slight amounts of CC, that would only cause some discomfort on not getting 100 percent regular, and staying healed.

I read the label of chex cerial, and I saw no diary, nothing related to dairy, but if I'm intolerant to soy, I was having the soy milk with the chex, so rice or almond milk, or maybe something else in it's place?

I agree, I'm probably getting cross-contaminated, I've been in denial thinking that I can get to a certain point, but when my bowel movements went south and returned like back in January, I hate taking colestramine powder to force my system back to normal, that's my family doctors only remedy to offer any help.

I don't know what to do, as my family doctor knows nothing about this, he's trying to just pound anxiety drugs through me, telling me my guts just need some help to calm down, rather finding a real celiac doctor in my area, and or doing some serious tests making sure nothing else is possible cause to alarm, since my layoff from work 3 weeks ago, I only have 100 percent insurance till end of June, then I have to pick-up cobra at 50 percent off the premium, and with a job loss, it's gonna be hard to pay all this extra money for all this gluten-free everything.

For tonight, I ate a turkey burger plain with no bread, steamed broccoli, 1 baked potato and some orange juice. For break feast this past morning, I ate some scrambled eggs, with some orange juice, and everything has been good.

I will keep trying to remind myself, as this is a work in progress, it's just a difficult time, and this is going to take more effort than I had thought. Thanks!

[new2celiac2k12]

Sorry, I forgot to add this:

Anytime I have any issue with not being regular, any discomfort, I order a gluten free pizza at Davanni's pizza close to me, and I have the best results from eating that, perfect stomach reaction, and I even order the works, I can't believe it, if I had serious diarrhoea the morning of, and ordered one of these for supper, I would be fine on the next movement, I can't even believe it, but paying 16 bucks for a small pizza gets too expensive.

[new2celiac2k12]

Well I went and saw my family doctor this morning, and after talking back and forth, and with my current insurance ending at the end of June, he agreed to request a Hida Scan, and an MRI of my mid to lower back, for the back pain that has been persistent since January, not as severe, but when I sneeze or cough hard, I can steel feel pain in my back.

So I have 4 hours of MRI testing this Thursday, and this will put to rest if anything is causing any issues with gallbladder, other than just plain old celiac / dairy intolerance.

My family doctor refered me to a different gastroenterologist, for a second opinion, but I will wait after the Hida scan and see what that comes up with.

My family doctor seemed frustrated on requesting this additional testing, as he does not believe anything is wrong with my gallbladder, I had to wait over 30 minutes just to see him, and when we were done, he didn't even shake my hand, or seem comforted in saying, have a nice day.......Oh well...As it goes.....

[new2celiac2k12]

Update: Well I got my results back from my hida scan, and my family doc said, well you have a 1 percent Injection Fraction rate, where it should be between 40 and 70, meaning a very very sluggish gal bladder, so he tells me to see a gal bladder surgeon to possibly have it removed, just think I've been asking for this test 3 - 4 months ago, just glad I'm going to have all this done on my insurance before it ends on the 29th of this month, just glad I demanded my doctor do the hida scan to make sure.... I'm seeing a surgeon this Thursday 8 am, and we will see....

Also, I had a MRI on my mid to lower back, and lumbar, and there was a bulging disc but low enough where it's not a real concern, lower lumbar area, I'm going to have a report sent to my chiropractor since he was originally treating me for my back, and symptoms.

As per discussed, I've been avoiding dairy 100 percent, I've been drinking rice milk, and eating gluten free honey nut chex, and it's been good!, been using extra virgin olive oil for cooking, eating pork chops, bushes original baked beans, green salad with a light splash of raspberry vinaigrette dressing, and it's been good.

I'm going to be so happy to get my gal bladder done, so I can truly heal and move on, and know that it's not contributing to the problem!!! Doc says he still does not believe it's not causing most of the stool issues.....

Feeling better, but more hope to follow!!

[new2celiac2k12]

6/28/12 Udate:

Two weeks ago today I had my gal bladder removed, I reacted to the anesthesia so bad I was kept overnight for observation, but overall surgery went without any issue, and my surgeon gave me a return to work relase with NO limitation for either July 9th or the 16th.

While in the hospital, I had a wrist band for food allergies, and they still gave me food that had wheat, I even said no milk and they gave me milk, so it was a challenge getting through the hospital stay overnight.

For now, I'm having some serious pain with my lower right side of my back, slight above the waist area, but after I walked like 2 miles yesterday, I was in some serious pain, it lasted into the night where I could not sleep, I almost went to the ER to see what the heck is going on, but I did not go, and still have some pain breathing, coughing,can't sneeze or hiccup.

Overall I've been using rice milk, and staying away from as much of any milk products I can, making egg white omelets with little hash browns and some ham, and a piece of gluten-free rice bread, then making chicken strips with teff wrap which seems to be very good and refreshing.

I can see, where I was in denial thinking I would have to not work as this as much, but seeing for the time being, I've been making a great effort, and conditions are improving, more and more each day.

The only part I want to see what others think about this is:

In order to be Celiac, we have to have the genes and a triggering event, well not one single person in my family has celiac, no one ever has, so how could I develop Celiac and only have stress to trigger it, rather than a surgery, to be the answer?