Diagnosed...now What?

[Bubba's Mom]

So...my primary care Dr. had me pegged as a neurotic hypochondriac until my CT scan came back with enlarged lymph nodes. He said "maybe you should find a GI specialist?"

I found one and she ran the tests neccessary to diagnose Celiac Sprue. When I went in for my follow up visit to get the Dx, she said "don't eat gluten" and she ordered a Dexa scan and vitamin/mineral levels. That's it! No print outs with info on what gluten is. No counseling on vitamin/mineral suppliments. No info on what to expect in the healing process.

I called to see what the results of the tests were and was told "everything looks ok, except you have Osteopenia. Take a calcium and vitamin D suppliment".

Is this the way Celiac is usually treated? No guidance at all? I was told my Dexa results would be forwarded to my Primary Dr., but I don't know why?

I guess I'm just really frustrated! I'm told I have a life threatening illness, there's no medicine that will help. I will have to be the one in charge of my treatment which relys on struct adherance to a gluten free diet, but wasn't told what that is, and what to look out for in an ingredient list.

Does the GI specialist just Dx a person then they're on their own?

If I have questions or unresolved symptoms, do I call my Primary care or the specialist?

I feel like somebody just threw me into the deep end of a pool..with a brick tied to my ankle..and yelled swim!

[sa1937]

Welcome to the club! Glad you proved you're not a neurotic hypochondriac!!!

It's pretty common not to get much, if any, guidance from doctors. After you've been here awhile, you'll probably know more than they do! Maybe you already do.

You should get copies of all your test results and stick them in a folder so you can refer back to them. If you have GI problems, I'd go back to your GI dr. I guess for other questions, I'd go to my primary care dr. Hopefully others will be able to give you some more suggestions.

[sa1937]

I just thought of some books you may find helpful and, of course, ask all the questions you want here on the forum.

Celiac Disease: A Hidden Epidemic by Dr. Peter Green

Living Gluten-Free for Dummies by Danna Korn

The First Year: Celiac Disease and Living Gluten-Free: An Essential Guide for the Newly Diagnosed by Jules Shepard

[Skylark]

Welcome to the pool. Don't panic. We're experts in providing life preservers and trust me, the water is fine. I like to tell my friends that I eat just fine since champagne and caviar are gluten-free. Yes, it's typical for your Dr. to not do much besides diagnose celiac. Doctors are scared to death of telling people that they have to change their lifestyles because they get yelled at and nobody listens. Think of it as a blessing that we have an illness that is 100% treatable by lifestyle changes. Who wants to take a pill forever? Ugh!

Gluten is a protein in wheat, rye, and barley. It's in a lot of foods and a lot of additives so you will need to learn how to avoid all wheat, rye, and barley. It sounds tough at first, though you'll find that cooking gluten-free is really easy. Eating out is the tricky part.

For starters, clean up your kitchen. Get a gluten-free cutting board, a separate toaster (you'll never get all the crumbs out!), and replace seasoned cast iron and scratched teflon. If you live alone, throw away or give away all breads, pasta, cookies, soy sauce with wheat, baking mixes, and flours. Also get fresh jars of spreads like mayonnaise, peanut butter, margarine, or anything else you dip a crumb-covered knife into. If you share a kitchen, get your own jars and mark them with colored tape or find squeeze bottles that won't get contaminated with breadcrumbs.

At first, go for naturally gluten-free foods. Shop the outside of the grocery store and skip processed foods. Fruits, veggies, beans, cheese, potatoes, corn, rice, plain salted nuts, meats or fish you cook yourself and eggs are all naturally gluten-free. You can also have buckwheat, millet, amaranth, and quinoa and there are plenty of recipes for them on the board. (You must avoid oats, unless they are marked gluten free. Normal oats have too much wheat in the fields and will make you sick.)

For bread and baked goods that are normally made of wheat, there are a lot of specialty gluten-free versions. They will say "gluten free" on the package. Udi's is a great brand. Rudi's bread is also popular around here, and I usually like Glutino products.

As far as label-reading, it's trickier with processed foods. They have a lot of ingredients and wading through long labels isn't much fun. Here are lists of safe and unsafe ingredients.

Safe list:

https://www.celiac.com/articles/181/1/Safe-Gluten-Free-Food-List-Safe-Ingredients/Page1.html

Unsafe list:

https://www.celiac.com/celiac-disease/forbidden-gluten-food-list-unsafe-ingredients-r182/

I'm sure you'll get a million other replies and tips. Good luck!

[Bubba's Mom]

Thanks so much for throwing me a life preserver!

I've reading..reading..reading. I don't know how long it takes for villi to grow back? Is there some food or nutrient that helps the process?

I've been mostly sticking to the outer parameter of the grocery store. Haven't tried any breads yet, and it's been way too hot to play around with baking my own things.

I guess dairy should be a no-no for a while?

[Skylark]

You're welcome.

Hey - you should look at this thread. We all put our top couple pieces of advice for new celiacs.

Everyone's healing process is different. It seems like a lot of people start feeling better after maybe four months on the diet. Don't panic about your villi. I know this sounds a little cavalier but you've lived this long without them. Every single day you stay gluten-free, your intestine heals a little more.

I've read that the amino acid L-glutamine is good because your intestine uses a lot. It's certainly safe to take. Probiotics are also helpful in getting your gut healthy. You'll find plenty of gluten-free choices at a health food store and the staff there can tell you what their customers like. Other things to grab are some vitamin D (2000 IU a day is what my Dr. recommended), B-complex, and you mentioned osteopenia so of course get some calcium. That will sort itself out once you start absorbing calcium better.

Dairy is an individual thing. Some celiacs tolerate it but others don't. Some folks are lactose intolerant until their villi heal, since lactase is made at the tips of the villi. I had trouble with cow's milk (goat was OK) and soy that went away after a year or so. Stop eating dairy for a couple weeks and challenge. Alternatively, keep a food diary and track any reactions. Other foods to keep an eye on with a food diary are soy and corn.

I would go to the GI specialist with GI questions and the primary care doc with everything else. I find primary care doctors are better about returning calls.

[T.H.]

So sorry your doctor is just like so many others: not really helpful. :-(

But like Skylark said: at least this illness is one where we can take care of ourselves, in many ways! Phew! Just imagine if we had to get pills from 'helpful' doctors like this!

For the villi, what I've read is that if you're healing, the longest it usually takes is 2 years, but some can be healed within months. If you are noticing NO improvement after 6 months, I'd contact the GI or get your doc to do the blood test again. If you've had no previous retest, they should retest your blood around 1 year, even if you feel fine, to make sure you are improving.

I will pass on what my GI doc told me (my second one, as my first was pretty much like yours). Mine has a lot of celiac patients and he told me the following:

- his celiac patients seem more sensitive to dyes, flavorings, and preservatives.

- his C patients seem to be more likely to react to other foods or develop sensitivities to foods.

- his C patients seem more sensitive to pesticides and genetically modified foods.

So, he recommends that his new celiacs go organic and try to avoid a lot of dyes and so on. In his opinion, it impedes the healing process if you react to other things you ingest while you are trying to heal.

On healing - a friend swears by aloe vera juice, which has some slight anti-inflammatory properties. I don't know how well it does with healing, but she gives it to her daughter and takes it herself whenever they get 'glutened.'

Oh, and yeah, I'd avoid dairy at first. Just for a few months. I'll be honest...when you avoid MORE than just gluten in the beginning, going back to 'just' gluten free is so much less restrictive that it feels hardly restrictive at all.

[Bubba's Mom]

Thanks so much! The advice thread is one I somehow missed?

I've been gluten-free for about 4 weeks and still get pain after eating. My biopsy report mentioned Crohn's disease as a possible cause for the villi damage/ulcer in the intestine too. The specialist never mentioned Crohn's to me, so I don't know if that was ruled out somehow? I was expecting to feel better by now. I've read so many posts about people feeling better immediately I thought I was odd?

The gall bladder type pain and burping/reflux has stopped though.

I ate a soy yogurt and got sick from it. It made me wonder about having a problem with soy. It was time for a check up with my allergist on Monday and I told him about the Celiac Dx. He said dairy could cause flattened villi too. I asked for food allergy testing and will get that in about 2 weeks.

I don't know if allergy testing will show sensitivities or just allergies?

I decided to clean out the fridge yesterday. Found barley under the bottom drawer mixed with a gooey mess from spilled drink mix. It took scrubbing and scraping to remove it. Today I feel completely wiped out, like I could just fall asleep if I sit still too long. I didn't ingest any barly, but I'm wondering if skin contact can get me? Normally, I'm wired and can't sleep, so this is unusual for me!

[Skylark]

Usually if you have celiac, GI docs will see if gluten-free works before diagnosing Crohn's. I had GI symptoms improve pretty fast but my overall health took quite a while to improve.

Allergy testing only shows allergies, not necessarily sensitivities. You're on the right track simply watching what you react to. I was reacting to a lot at first. The intestinal damage lets proteins from food through to your bloodstream where you can react to them. It's called "leaky gut". As things heal up, it becomes less of a problem.

Skin contact gets some people. Also you probably got some barley in the air with all the scraping and scrubbing. There are people on the board who react to airborn flour particles. (Your doctors will tell you there is no way this can happen. Just smile and nod.) Oh, by the way, my insomnia improved dramatically once I got on good vitamins/minerals and my intestines healed enough to absorb them.

[Bubba's Mom]

Thanks for the additional info!

I'm keeping a food diary, which I only started a week or so ago. I make a note of any symptoms I have too. I guess with some things there's a delayed reaction so figuring things out might take some detective work? At least with a log of what I've eaten I can do a better job of finding anything suspicious?

Crohn's scares me...a lot! My sister has it bad and has to get IV therapy. I've watched her go downhill pretty fast the last couple of years. I told her to ask her GI doc about Celiac testing since her Crohn's won't come under control and she balked at the idea!

Both of our parents had GI symptoms, but were never diagnosed with anything. My Dad died in an auto accident many years ago, so we'll never know what his problems were. My mother never went to Dr. other than for childbirth. She believed in prayer instead..which is probably why she died several years ago from coronary artery disease.

Both parents had to get their teeth pulled and get dentures in their 20's. I've had bad teeth all my life too. I'm seeing that it can be a symptom?

[T.H.]

I guess with some things there's a delayed reaction so figuring things out might take some detective work? At least with a log of what I've eaten I can do a better job of finding anything suspicious?

... I've had bad teeth all my life too. I'm seeing that it can be a symptom?

Re: bad teeth - yeah, that can be an issue. Both my children had this issue and both have gluten problems.

Re: foods - would it be possible to list what your eating right now? What your cooking process is? Like what pots you use, what else is cooking at the same time? What items you might share with a spouse? Your hygiene products that can come into contact with your lips, like shampoo, lotion, mouthwash? Any people/pets your lips come into contact with that might have gluten on them, like spouses or babies or cats?

If you'd be comfortable providing a bit more information, a lot of people here could have some insight to offer that might cut down on the time it's taking to track down the problem areas. Maybe, anyway.

Re: the food journal - it can definitely take some detective work. From my own experience, the simpler foods you eat and the more details you keep track of, the easier it is to see a connection. Although with the delayed reactions you mentioned, that can still take a while. And although doctors don't always agree, in my own experience, ANYTHING can be a symptom, so take copious notes.

If it happens every time a certain food is ingested, then whether it's an allergy/sensitivity/intolerance/ or something else - it's not a good thing.

I get an earache in my left ear - and only my left - with a certain food. So freaking weird, but it happens EVERY time I eat it. Headaches with others. Insomnia with others.

I used to say for a while that it felt like one of my symptoms with gluten was getting clumsy, which seemed ridiculous. When I was finally 'clean' and not getting any gluten cc, we discovered that I get vertigo when I get glutened. And it's mild when I get mildly glutened, so what does it result in? My balance being off just enough that I get really, really clumsy.

So seriously - anything can be a symptom, if it tracks, even if we may not know WHY it's a symptom at the moment.

Some examples of what we track now/do now, after doing this a few times:

- try to eat the same foods a few days in a row, and if we can, only change one or two things at a time. Easier to notice problems going away and returning that way. If we suspect a certain food and wish to eliminate it, it's been easiest to look up the entire food family and drop all of them, just in case. Like pinto beans being a problem would mean we might eliminate all legumes for a while.

- make sure to record the times we eat, and the times we react. At this point, when there is a food I suspect is an issue, I do a 'health check' at 5 minutes, 20 minutes, 1 hour, and 24 hours after consumption. I will first eat a small amount, and then if there is no result after 24 hours, I will go have a good binge and check again. The times have really helped. I have some foods that I react to within 20 minutes, without fail. Some that I always react to within 24 hours.

- keep track of farms and companies as well as the ingredients themselves. This helps you track down a contaminant or pesticide sensitivity, not just a problem with the main food. I've run into issues with a pesticide commonly used by one farm, and a wheat cc issue on an equipment line that made multiple products (which we were trying many of).

- try some days where we don't use ANY of the same ingredients that we've been using. There have been anti-caking agents and corn in our salt that we had problems with, but didn't realize this because we had salt every day, no matter what else we ate. Same with oils.

- keep track of what equipment you are using, in the beginning. See if you can get one new pot or pan and a cutting board, and put it aside for yourself to see if it helps. I had too much food for one pan, one time, and so made the exact same food in two separate pans. Food from one pan was fine. Food from the other pan made me sick as a dog. We experimented later and realized the second pan got contaminated somehow and I was getting sick from food cooked on it.

- If we think we have a problem food, now we research it and experiment with it. People who have allergies to a food are great resources for pointing out unexpected places it might show up (like cornstarch being used between paper plates to keep them from sticking). This can help make sure we are completely eliminating something. And experimenting can help make sure we are reacting to the food the way we think you are. So we buy the same food from different stores or farms. We try it cooked and raw. We are even growing some foods ourselves to see if pesticides or other contaminants might be an issue.

It's work, I won't lie to you. But the more work we have done on our journal, the faster we got results, and the less we had to go back and 'redo' certain food trials because we hadn't considered one factor or another.

[cassP]

um, yes... it is completely normal for your doctors not to explain anything to you. uh- we have all been there... i am STILL learning everything myself and asking for what tests to be run... and each time i discover a new vitamin deficiency- i have to get on here, or one of the thyroid forums im on just to figure out what i need to be taking. it's entirely frustrating yes- you really have to learn it all yourself if you want to get healthy.

everybody here has great advice- keeping your own file is crucial- also request copies of all your results and keep them in your file- any blood tests, etc... i dont know anything about a dexa scan.. i have learned SO MUCH and HELPED MYSELF by looking at my own blood results. try to keep all your doctors informed too- so that they can help you better. i try not to get so pissed off with my doctors but rather share with them everything that's going on, so that they can help me better.

its funny- my GI actually told me to get online and find others with Celiac and gluten intolerance, lol... he said that there would be a wealth of information online- so right.

i assume it's pretty common for anyone with gluten intolerance to develop Ostopenia.. we can suffer from just about anything that deals with malabsorption & vitamin deficiencies. i am dealing with D, & Iron deficiencies at the moment. B12 def also common... i encourage you to be your own patient advocate- and get on here to find out optimum levels for your vitamins- none of my doctors have helped me at all. they just agree to the order when i ask for it.

good luck and welcome!

[Bubba's Mom]

I guess I should keep more detailed records? I have a small notebook that I write whatever I eat in. I hadn't thought to list the time. Mostly I realize I hadn't eaten any lunch or supper and eat because it's time to, not because I'm hungry. I've been having balance issues and sometimes a mild pain in my left ear. I even had the allergy Dr. look at it and he said it looked fine and if there's anything wrong it has to be in the inner ear? I sure would like to find the cause!

My son moved back home a couple of months ago, bringing his 2 dogs with him. I have one dog..a drooly Blood Hound, with allergy issues. I have to give him medicine daily, and clean his ears which have an on going infection. Bodily fluid contact!

His dogs had some behavior issues, like jumping the fence, potty in the house, stealing food, etc. I imediately started a reward system with dog biscuits. They get several a day..all 3 of them. As far as I know it's my only contact with gluten? I don't let them lick me, but his 2 keep trying. I always wash my hands afterwards.I'm allergic to dogs, so it's a double whammy if they lick. I'm happy to say all of the behavior issues are completely gone!

Right now I don't have much of an appetite. I mostly eat fruits and rice cakes(they have a lot of nerve calling themself cake!), sweet potatoes cooked in the microwave,and hard boiled eggs. I only cook in stainless steel pans that have gone through the dish washer. Corelle plates/bowls that have been through the dish washer.

My hubby and son are rarely here, but my hubby especially, isn't careful about leaving crumbs from toast or whatever, scattered. He was going to make garlic bread in the oven last night directly on the oven rack..no foil, no pan. I told him he needed to use foil!

Foil is my friend. Since I never know if a surface has been contaminated I lay a piece of foil down and work off that if there's anything that needs prep.

I'm wondering if handling the dog biscuits is causing my balance issues? It doesn't seem like it could?

[cyberprof]

I guess I should keep more detailed records? I have a small notebook that I write whatever I eat in. I hadn't thought to list the time. Mostly I realize I hadn't eaten any lunch or supper and eat because it's time to, not because I'm hungry. I've been having balance issues and sometimes a mild pain in my left ear. I even had the allergy Dr. look at it and he said it looked fine and if there's anything wrong it has to be in the inner ear? I sure would like to find the cause!

My son moved back home a couple of months ago, bringing his 2 dogs with him. I have one dog..a drooly Blood Hound, with allergy issues. I have to give him medicine daily, and clean his ears which have an on going infection. Bodily fluid contact!

His dogs had some behavior issues, like jumping the fence, potty in the house, stealing food, etc. I imediately started a reward system with dog biscuits. They get several a day..all 3 of them. As far as I know it's my only contact with gluten? I don't let them lick me, but his 2 keep trying. I always wash my hands afterwards.I'm allergic to dogs, so it's a double whammy if they lick. I'm happy to say all of the behavior issues are completely gone!

Right now I don't have much of an appetite. I mostly eat fruits and rice cakes(they have a lot of nerve calling themself cake!), sweet potatoes cooked in the microwave,and hard boiled eggs. I only cook in stainless steel pans that have gone through the dish washer. Corelle plates/bowls that have been through the dish washer.

My hubby and son are rarely here, but my hubby especially, isn't careful about leaving crumbs from toast or whatever, scattered. He was going to make garlic bread in the oven last night directly on the oven rack..no foil, no pan. I told him he needed to use foil!

Foil is my friend. Since I never know if a surface has been contaminated I lay a piece of foil down and work off that if there's anything that needs prep.

I'm wondering if handling the dog biscuits is causing my balance issues? It doesn't seem like it could?

Yes, the dog biscuits could be causing the problem. Try getting disposable medical-type gloves and wear them when feeding dog treats. It will also prevent you from getting dog allergy symptoms.

I use a LOT of aluminum foil. Also I use parchment paper and waxed paper for the same purpose...it's easier to cut on that.

[Bubba's Mom]

I think gloves are going to be a good idea! Thanks for your input.

I'm trying to be like a sponge and absorb all the info I can.

[Hawthorn]

I want to add too to this - my hands always find their way to my mouth. If I'm thinking about something, I kind of rest my index finger on my bottom lip, or if I'm worried I'm a habitual finger tip sucker, this kind of thing. All automatic things that I do out of habit, and not something I even thought about until I discovered I had a gluten problem.

Now, I'm obsessive about handwashing, and trying really hard to break the 'fingers to mouth' habit because I suspect that gluten is on practically everything in my household, having four children and a husband who eat gluten stuff on a daily basis. Although the kids eating a sandwich/biscuit and stroking the dog, then me stroking the dog probably won't hurt me once in a while, if it's ten times a day (or more.....my fingers find their way to my mouth an awful lot) then I guess it builds up.

I figure it's impossible to make sure everything is free from gluten that you touch.....it's just too huge - shop door handles, shopping trolleys and baskets. It gets scary. I can't control this, but I can stop doing silly things like touching my mouth - not good when I occasionally have a good old suck on my bottom lip too

Anyway, might be something for you to watch out for Good luck with it!

[Bubba's Mom]

LOL..yes! The fingers to mouth is a big problem I've noticed.

Geesh..it seems like I need to change everything I do!

[cyberprof]

LOL..yes! The fingers to mouth is a big problem I've noticed.

Geesh..it seems like I need to change everything I do!

I use paper towels to touch refridgerator handles etc., at work and wash my hands a lot.

At home, there is less gluten but I don't eat anything or prepare any food without washing my hands and after that, being really careful about what I touch.

I also refuse to touch bread, wheat noodles etc. I use gloves or the wrapper as a barrier if I make something for my daughter or if I cut up bread (very rare...daughter is in college or sometimes if we have my inlaws over for dinner). I think I might have a contact allergy with wheat too because I itch afterwards. Sheesh, it is annoying but do-able!

[T.H.]

You might also want to check on the brand of rice cakes are you eating. Some of them are not always gluten free.

As an example, Quaker oats, as I understand it, processes their rice cakes in a facility that also processes wheat and oats. Their website just says: Since so many of our products contain grain ingredients and many products are made in the same facility, we cannot guarantee that any particular product is entirely free of gluten.

A friend of mine recently had to stop giving her gluten intolerant son these because he was reacting to their mini ones, so it can definitely be an issue.

Also, if you are eating Lundberg rice cakes (which seem good on the gluten free front), that could still be a potential issue if you happen to get an extra whammy and are an oat sensitive celiac. For those with this issue (about 10-15% of celiacs), any oats, even gluten free ones, can give a reaction that is pretty much like a gluten reaction.

Unfortunately, Lundberg uses oats as its rice cover crop, and some oat sensitive celiacs like myself seem to have trouble with their rice products.

[Bubba's Mom]

I didn't even think to question the rice cakes!

Even when you think something is safe it may not be.

[Hawthorn]

I didn't even think to question the rice cakes!

Even when you think something is safe it may not be.

The ones I buy are labelled gluten free but I can't tolerate them. They give me raging heartburn for some strange reason. A good excuse not to eat them, since they remind me of cardboard anyway

[Skylark]

I didn't even think to question the rice cakes!

Even when you think something is safe it may not be.

The safest foods are ones you can look at and tell they are gluten free. There is no gluten in a whole potato, an apple, a bunch of broccoli, a head of lettuce, a carrot, an egg, etc. You can pick over dried beans and look through whole grains like quinoa or millet as you wash them. If the bulk of your diet is whole foods you cook yourself, it's super-easy to avoid the gluten. Besides, it's FAR healthier than eating processed food.

Processed food is a real headache. Most celiacs are fine with all the commercial gluten-free foods. ConAgra, Kraft, and General Mills have committed to declaring if they use an ingredient derived from wheat, barley, or rye on their labels, even if it shows up in "natural flavors". You do have to check the label every single time you buy a processed food because the ingredients can change.

[Bubba's Mom]

I completly understand the whole foods concept..but sometimes (actually most of the time) I just want to grab something and munch without cooking. I get tired of just fruits..or carrots, cucumbers etc., for snacks. I like crispy/crunchy things. I thought rice cakes were the perfect munchable thing? The ones I have were bought at Aldi's grocery and are their generic brand. I guess I need to buy the ones that are 4 times the price, but safe?

[sa1937]

I completly understand the whole foods concept..but sometimes (actually most of the time) I just want to grab something and munch without cooking. I get tired of just fruits..or carrots, cucumbers etc., for snacks. I like crispy/crunchy things. I thought rice cakes were the perfect munchable thing? The ones I have were bought at Aldi's grocery and are their generic brand. I guess I need to buy the ones that are 4 times the price, but safe?

The large Quaker rice cakes are marked gluten-free right above the ingredient list (always check the label). I have the plain lightly salted ones that I enjoy with peanut butter on them. I think the last time I bought them at Wal-Mart, they were $2.00.

Hopefully you don't have a problem with rice???

[Bubba's Mom]

Thankfully, I don't seem to have a problem with rice!

I'll look for the quaker brand. The ones in the "health food" section of the grocery store were $4.99. The brown rice ones were $5.99. A bit steep I thought!

The ones at Aldi were $1.29. a big difference.