Jump to content

Follow Us:   Twitter Facebook Celiac.com Forum RSS      

Get email alerts  Subscribe to FREE Celiac.com email alerts
arrowShare this page:
Subscribe Today!

Celiac.com Sponsor:
Celiac.com Sponsor:


Member Since 12 Sep 2008
Offline Last Active Mar 26 2015 06:10 PM

#683508 Why Can't She Have It In Moderation?

Posted by on 14 March 2011 - 03:34 PM

Stick around on the forum and you will learn a lot of information about research, advice, coping, and cooking. You are a great husband for doing research for your wife.

When I'm describing cross contamination or cheating on the Gluten Free diet, I like to make a distinction between reactivity and sensitivity.

All celiacs are highly sensitive to gluten, meaning they will have microscopic damage from even small (think crumb size or less) amounts of gluten. There is a study floating around out there that states that 90% of celiacs will have intestinal damage from 20 parts per million of gluten contamination in their food. The other 10% will have damage from smaller amounts of gluten. As celiacs, our sensitivity levels are similar. Essentially zero tolerance to avoid intenstinal damage.

Then there is how a person subjectively reacts to the gluten. How does it make them feel? Some people get a little gassy from a random crumb. Others, feel pain for days or weeks from foods processed on the same lines as gluten foods. There are some celiacs who stop reacting to gluten altogether after a period of time (however they still have intestinal damage from eating gluten). Everyone's reaction is different. People who are regular cheaters on the diet will often not notice how they are reacting because it just feels normal for them. For this reason, I often advise people to be extremely strict in the beginning of the diet, so they find out how good they can feel totally gluten free and then when they add back slightly riskier foods like gluten-free oatmeal, grains, foods from shared lines, restaraunts, and friend/family cooked meals, they will be better able to tell if they are reacting.

Now, why would you and your wife care about occassional intestinal damage? One study suggested that undiagnosed celiacs have a 2x chance of dying from all causes, but that celiacs who are intermittent consumers of gluten have a 6x chance of dying from all causes. The same blood tests used to diagnose your wife can be used to monitor her compliance with the diet. 6 month then annual checks are sometimes recommended. The numbers should drop over time and eventually fall into the normal range if she is able to get all the gluten out of her diet. Cross contamination happens to all of us, especially in the beginning. It's a lifestyle change once you are diagnosed, but with time and education, most of us are very happy with our gluten free foods and healthier bodies.
  • 1

#680564 Celiac Disease And Dyspraxia

Posted by on 05 March 2011 - 09:48 AM

As a speech pathologist, I have not seen literature associating dyspraxia with celiac. There may be some out there I have not seen though. There is some evidence of speech language impairments in adults related to celiac and gluten ataxia. There is also evidence that gluten ataxia causes lesions in the brain. I'm guessing the association between celiac and dyspraxia (as well as other speech-language disorders) is understudied.

As a celiac with neurologic issues, I would not doubt a possible association. I developed mild slurring, stuttering, and mild to moderate word finding problems as my symptoms became more severe. It really made communicating with other speech pathologists embarassing. Not all my symptoms have returned to baseline. My vitamin levels were normal for the most part. I'm just a celiac with neuro problems instead of GI problems.

The good news is that if there is a connection, now that your daughter is on the gluten-free diet, she will only improve.

ASHA.org is the national speech pathology website and there is lots of information for what you can do at home on there.

Consider getting her vitamins tested to see if she is low in anything specifically.

The best thing you can do is treat the celiac and treat the dyspraxia and processing issues. The more aggressively and sooner the better on the dyspraxia and processing is my opinion. The sooner those are under control, the less difficulty she will have with all aspects of school and especially language which is so important to get well established in the early grades. Read up and start a 10 minute/day home exercise games and you will be ahead of this in no time. I've found that parents who schedule fun, brief activities daily with their children make better progres than families who make structured speech work time for 30-45 minutes a night or than families who do nothing at home. The 30 minute kids get stressed and resist therapy. The zero home intervention kids just take longer.
  • 1

#680555 Skin Pain And Sensitivity

Posted by on 05 March 2011 - 09:21 AM

Before diagnosis and while I was in the intial months of healing, this was a major symptom for me. It hurt to towel dry after a shower. That was when I knew my doctors were full of crap and I needed to get aggressive with finding out what was wrong. I remember curling up in a ball and crying to my husband one day because my towel and my sleeves and his touch were hurting my skin so badly. I had already been to a neurologist to no avail.

Once I got my diagnosis, it took a few weeks, but things improved a little. The stricter I got with my diet, the better my skin felt. After about 3 months, the towels and sleeves didn't hurt anymore. 6-9 months later, I was able to tolerate my husband nicely touching my arm or leg without it making my skin crawl. Now 2.5 years later I'm retraining him to give me a back rub like a normal person again.

Time on the gluten free diet really does move faster the longer you are in the diet. Hang in there. It's hard to believe now, but it really does get easier as time passes and as you see baby steps toward improvement. As a side note, all of my neurologic symptoms have improved on the gluten-free diet, but not have been eliminated totally. Almost all are back to a level which is intermittently annoying, but not impairing.

Trigger point therapy was very effective in helping speed up getting rid of the muscle knots that went along with my tender skin. I had both trigger point injections and a physical therapist who taught me trigger point release to do at home. I was pretty aggressive in doing 30-90 minutes at night before bed while I watched TV.
  • 1

#671296 Introductions And Information Frustration

Posted by on 28 January 2011 - 12:48 PM

Welcome to the board! Keep posting and asking questions. Everyone is really helpful. I'll address two of your concerns.

Hygine products including makeup, soaps, shampoos, etc.: In theory, the only time these items will cause a reaction is if you ingest them. The reality is that we get a little hair in our mouth on a windy day, shampoo trickles down our faces when we rinse, blush travels through the day off our cheeks onto our hands and into our mouths, hand lotion is transferred to the food we eat, and lipstick is just plain licked and swallowed. There are a few of us who still use gluten containing hygine items, but the majority of us have found we feel better or safer by switching to gluten free options. If you ask, people will give recommendations of brands from drugstore to department store.

Conflicting information: Yup, we've got it. Some is from old information, some is from lack of research, and some is from varied personal experiences. My advice is always to start out stricter than you think you need to be. It will help you heal and you can always add back questionable items after 3+ months of learning your new body. I wish I had taken my own advice in the beginning. I just had to do it the hard way and my recovery continued to suffer until I got super strict.

May I also compliment you and your family for listening to each other when the possibility of Celiac was introduced. So many families are stubborn about testing and it is refreshing to see you guys supporting each other.
  • 1

#666343 Work Making Me Sick?

Posted by on 08 January 2011 - 08:07 AM

I'm new to this forum and relatively new to the Celiac life (July 2010) and am still trying to figure some things out. I work in a kitchen with deep fried chicken, fish, shrimp, etc. Since about September, work has been making me feel sick. It started that I would have sinus issues or my throat, so I thought it was more related to the heat and grease than the gluten, but it has developed into if I'm working the fryers, my stomach will cramp up within five minutes and I will feel sick for days. I've spoken to my managers about being moved away from the kitchen and more into the front portion of the restaurant, where I feel almost no effects, and they said they could with a doctors note, but are hesitant to believe me. My assumption is that when the food is fried in the oil, it vaporizes and I inhale it, but I'm not 100% sure. Has anyone else had this experience?

I don't have the exact same reaction, but I do have an airborne reaction. When I'm around the bakery at the grocery store, on the same ventilation as the cafeteria at work, or around certain hot gluten items, I get a milder neuro reaction that is short lived if I remove myself from the environment. If I continue to stay, the reaction gets stronger and lasts longer, but has never been as severe as if I had eaten the gluten directly.

A couple of thoughts:
1) Could you be getting exposure from the battered product before it is placed in the oil? Perhaps in the form of airborne flour.
2) Could you be getting a fine mist of glutened oil floating up into your face and landing on your lips? You would wind up eating that mist. Also remember that our nose and eyes are attached to our digestive system.

Another thought for you is that if you are handeling the gluten all day, could there be some residual left on your fingers after washing and then you wind up cross contaminating your lunch/dinner/water cup?

I hope you get that doctors note and your transfer.
  • 1

#663874 Death By Frying Pan

Posted by on 29 December 2010 - 02:43 PM

Check your hygine products too.
  • 1

#663588 How To Handle Eating Out With Cc Risk?

Posted by on 28 December 2010 - 11:34 AM

You're right. Anytime you let someone else prepare your food, you will be risking cross contamination. Fortunately, there are some ways to mitigate that risk.

I will first say that I always recommend being in control of your own food for the first 3-6 months while you figure out what your body needs and while you heal. I wish I had taken my own advice when I first was diagnosed. Instead, I tried to manage the cooking of others while I was still learning myself. I'm very sensitive to trace cross contamination, and used to have a 50% glutening rate when eating out. I'm lowering that rate with the following rules.

1) Eat at restaraunts that are either GIG certified, or have a chef (not just a cook).
2) Don't go out to eat during the dinner rush. Kitchen staff and waitresses are more likely to do something without thinking that will make you sick. I try to sit down between 10:30-11:15 and between 2:00-4:45.
3) Tell the waitress right away that you have food allergies to wheat and flour.
4) I ask her to wash her hands before she gets me my water and let her know that a tiny crumb from left on her hands from bringing bread to another table will make me sick. I'm nice about it and do this to let her know how sensitive I am.
5) The first time I eat at a restaraunt, I try to talk to the chef or cook (if it is a GIG restaraunt).
6) I order plain meat, potatoes, veggies the first time. The more expensive the restaraunt and the more competent the waitress/kitchen staff seem, the more likely I am to risk gluten free sauces and the garlic mashed potatoes that some GIG restaraunts have.
7) I ALWAYS ask for my meat prepared in a clean pan with clean utensils instead of on the grill. (The one time I forgot, I got sick).
8) I never order salads. I usually ask for an extra side of veggies instead. When I waited tables, the salads were either in a salad bar in the back that the waitresses prepared from with a high risk for cross contamination, or were prepared on plates before the dinner rush. We just pulled the onions or tomatoes off for people who didn't want them.

I take the view that gluten is impossible to completely eliminate from our lives, but that there are lots of things I can do to reduce the risk of getting glutened. I continually ask myself is it worth the risk? The answer is almost always NO. For me, no fast food, no diners, sports bars, no catering, no friend/family cooked meals. Over time, my mom has watched me prepare my food at her house using her ingredients. She is learning that it is not just the food that needs to be gluten free, but the preparation as well. I would probably trust her to make my food at this point (2.5 years later), as long as I was watching what she was doing. In the beginning, I was barely figuring out how to avoid CC myself.
  • 1

#660755 Still Worried About Mom

Posted by on 15 December 2010 - 10:05 AM

It's frustrating when you see loved ones eating gluten when you think it is hurting them. I've got a few family members that I think would benefit from the diet as well. All we can do is educate and if they decide to try the diet, enable them to get the yummiest gluten free products before they decide tapioca bread is the best the gluten-free world has to offer. The more consistent you are with your diet and the healthier you get, the easier it will be for her to know what to do and have support if she decides to give the diet a try again. Since mom has negative blood work, it may be a bit like encouraging her to quit smoking. She may know it is something she should do and stick with, but she may need to give it a try more multiple times. Your step father probably has spent years sharing bites of food with your mom while she was on some weight loss diet or another and does not see the difference. Give you mom the support she needs when she decides to try gluten free agian. In my family, if I pushed with too much education and pressure on the gluten free diet for mom, she would never give the diet a try because she would be proving herself wrong and me right. So, instead, I'm waiting for her to try the Atkins again and then after the 2 weeks when she reintroduces limited grains and feels terrible like she always does, I'm going to pounce on the fact that she felt good for the two weeks because it was essentially a gluten free diet.

So when you say I don't think there's much more you can do, I think you are probably right. Just be there for her when she tries it again and be consistent with your diet so she can see the benefits of how gluten free is helping your life.
  • 1

#660741 Doctor Tells Me I Need To Eat Gluten For 15 Days!

Posted by on 15 December 2010 - 09:23 AM

And if you want to continue with the gluten challenge, and want high gluten items, remember flour is about as high in gluten as you can get without eating wheat stalks. Oh, they sell vital wheat gluten from Bob's Red Mill in a bag. It would be like eating directly out of a bag of poison. Just pour a bunch of that into a bowl of barley soup or some cookies. (That's sarcasm, not a recipe). I can't even imagine the pain you are putting yourself through for that doctor. I know you really love your children and would do anything in the world for them, but I hope you can find another way of getting them a diagnosis.
  • 1

#660739 Doctor Tells Me I Need To Eat Gluten For 15 Days!

Posted by on 15 December 2010 - 09:15 AM

I have been on a gluten-free diet for 18 months and my life changed 100% for the better, my stomach does not hurt, I have so much energy, my body aches have disappeared, my mood is much better (ask my wife!), etc, etc... The problem is that I have three little children and the I am suspicious they are intolerant to gluten also as they are not growing at the rate they should be growing. Their pediatrician tells me that a gluten free diet for a kids is very stressful and before having the children examined he needs clinical proof that I am gluten intolerant in order to ask blood test to the children. He claims that the children donīt have the clasical simptoms, they are just growing at a slower rate, thus, he does not have reason to believe they are gluten intolerant... unless I am gluten intolerant and even though I am sure I am, I never had the proper blood work done to prove it.

Well, now I was instructed to be on a high gluten diet for 15 days before I take my blood tests... the problem is (as you can imagine by now) I have done it for 5 days and I feel terrible... i would like to eat some foods that are rich in gluten but to eat it less times per day as posible... so instead of eating bread and pasta and pizza (all rather fattening) I would like to ask for advice in which food is very rich in gluten so I can eat it once or twice a day and have the same effect (intoxicate my body with gluten) for my blood tests...

It sounds weird I know but I hope I could explain my self.

Ouch! You find yourself in an awful situation. The reality is that eating gluten for 15 days may not be enough. The typical recommendation is a MINIMUM of 6-8 weeks. If you go through with this 2 week gluten challenge, then don't produce enough antibodies, that doctor will have "proof" you are not celiac and won't do the testing on the kids. I've had a few doctors tell me that the gluten free diet is too difficult or stressful for their adult patients. I always argue that it is easier than being sick.

I think I would go about changing the doctor's mind one of 5 ways:
1) Get a letter from YOUR doctor diagnosing celiac based on response to diet and gluten challenge. Forget the blood work.
2) Call him up and let him know that the gluten is making you too sick to do the challenge for the 6-8 week minimum that is necessary for any chance at an accurate reading. Beg for mercy.
3) Insist that the children be tested via blood work and if he refuses, ask him to note in their medical charts that your specifically requested blood work and he refused. With this one, I would also be a bit forceful about the long term effects of gluten on a gluten sensitive child.
4) Get a different doctor to order the blood work. Even if that means switching pediatritians. (And shamefully, I will say lie to the new doc and say you have celiac. Don't go into how you've been diagnosed or for how long).
5) Just put them all on a gluten free diet for 3 months as a trial to see what happens then reintroduce.

I wish you luck educating this physician on the realities of celiac vs. the text book lessons of celiac. Remember, he may be pushing against testing because of insurance requirements for medical necessity prior to testing. You may need to help him see a way to prove to insurance this is medically necessary. Strong family suspicion of celiac disease. Multiple autoimmune diseases in the family. positive response to brief gluten free challenge, neurologic or digestive symptoms. Parent diagnosed with celiac (from your doc who will hopefully do this based on dietaty response).
  • 1

#659194 What To Expect After Gluten Free Diet

Posted by on 08 December 2010 - 11:16 AM

SaraKat my main pain area is my rib cage, mostly the left side but I feel like Im being squeezed to death, 6 years of mulitple exams/tests etc and Doctors can't work out why Im in so much pain, so hearing about your rib pain has given me some hope :D Im on week two although I've alot to learn about what I can eat (still eating lots of OAT products.

Thanks for the responses everyone it will help me a great deal :)
I've just been through my library of tests from the past 6 years and turns out I've never been tested for Celiac B) so I asked the Doctor yesterday (not normal GP I see just a one off visit) and she told me if I'd previously had a colonscopy and my bowel looked fine then I wouldn't have celiacs ? can they tell just from looking at the bowel ? not actually taking a swab ?

A colonoscopy CANNOT diagnose celiac. A blood panel and or EGD biopsy (through your mouth, stomach and upper intestines with at least 6 samples) while you are consuming at least 2-4 slices of bread/day are the standard way of diagnosing celiac. If you are positive on any of the blood tests or the biopsy, then it's celiac. Additionally, there are plenty of people who find relief from their symptoms by going on a gluten free diet. These people are either not tested for celiac or considered gluten intolerant (which might be a form of celiac that does not show up on current medical tests). Sometimes physicians will make a diagnosis on dietary response alone. Either way, these people know they feel better off gluten and don't usually care about a formal diagnosis. If you want a formal diagnosis, it is easier and more accurate for you to get the blood work done today while there is gluten in your body than after you have started the healing process. Lab results will likely show a false negative if you are not consuming enough gluten. If you don't care about a formal diagnosis, then do like you are planning and start a strict 3 month trial of gluten free.

As far as what did my recovery look like?
I had primarily neurologic symptoms instead of GI symptoms. Initially, I didn't believe that MY body would need to be as strict about cross contamination as everyone on this forum said I would need to be. I was careful about my food, pans and utensils, but not about my grill, cutting board, and speciality cooking items. I ate out a little in the beginning but tried to explain things to the waiter rather ineptly. I didn't get how or why oats would make me sick at first.

With that said, I started to sleep less and have more energy around the 5 week mark. That meant I could walk to the end of the subdivision and back without having to stop for a break. My mood lightened I think as soon as I got the diagnosis and it was confirmed I was not a crazy hypochondriac. Around the 5-7 week mark, I had some set backs and started wondering about my cross contamination. Then I got crazy, paranoid strict and some serious recovery started. I ate literally non-stop from about 3 weeks into my diagnosis into 5 months. Then I could go with 3-4 meals and a hearty snack between each meal. I had some blood sugar/hydration problems around 2-5 weeks. I guess a lot of people get those. Eliminating sugars and simple carbs and switching to only water helped settle that down. I was able to return to work at about the 4 month mark, but I was terribly fatigued still and slept as soon as dinner was finished. Hubby helped out in the kitchen so much. I was able to have the energy to have one social event/week after about a year. I gained 20 lbs because my body was absorbing nutrients finally. Lots of people asked me if I had lost weight though. I think they saw me looking healthier. At the 18 month mark, I started naturally loosing that weight and stabilizing back to a weight that was normal for me. The skin pain that I had been experiencing lessened after about 2 weeks. Piercing eye pain got less frequent over 12 months. Sunlight sensitivity lessened over 2 years, but it is still there. over sensitive hearing started getting better after 2-3 weeks, but really took a year before it was normalish. I'm still hyper sensitive to smells. I can smell cigarette smoke from a car ahead of me traveling on the highway. I've thrown out all my candles, perfumes and soaps. Migraine intensity and frequency got better, but not by much. Well, I stopped the constant sensation of I'm about to get a migraine, and went to either having or not having one. I don't have constant visual auras. My blood pressure stayed really really low and I never got over the sensation that I would pass out. The best part was getting pregnant naturall after being told I would need an egg donor. That was 21 months after going gluten free and 4 years after being told I needed an egg donor, and 8 years after trying to start a family. My muscle pain stayed very intense until I started physical therapy at the 12 month mark. they taught me about trigger point release and I started an hour of intense self treatment nightly. I slowly improved, but was not at all normal when I got pregnant. When I got pregnant, all the hormones relaxed my muscles and I feel fantastic. Better than I have since I was 7. I'm dreading the thought of my body returning to tightness after I have the baby, but the docs don't seem to think it is worth worrying about. (They are not in my body though).

At the 26 month mark, I'm coming to terms with the reality that I'm probably going to have more fatigue and need to pace myself more than the average person. I'm off antidepressants for the first time in years. I'm frustrated with always having to cook, but am eating healthier than I ever did while on gluten. I have questions every day and am taking small steps to expand my social network that was damaged from years of skipping parties and cancelling plans because I felt bad.

Oh, I said I had neuro symptoms, I also didn't realize it, but I apparently had some GI symptoms that got much more comfortable after going gluten-free and realizing I was allergic to milk and eggs and intolerant of nuts.

When I get gluten, (which I still manage to do about every 3-10 weeks), I get all the neuro symptoms back, but fortunately not as strong as they once were. The gi symptoms start within a day and both symptoms peak from days 3-5. I start to be myself again after about 2 weeks and feel something close to healthy after 2 months.

I hope whether you take the path of testing then a gluten-free diet or move to a gluten-free diet immediately, you are strict about it and that you feel better soon.
  • 1

#657553 Type Of Endoscopy Sedation...should I Do It?

Posted by on 01 December 2010 - 09:37 AM

For me, the twilight was the best option. I did feel the scope 2x. I suspect it was when they were taking it in and out. It felt like pressure, not pain. Maybe like swallowing a bite of food that was way too big. Other than that, I was asleep for the whole procedure. I did have a couple days of heartburn though. It was similar when I had my wisdom teeth out. I felt one part of that procedure, but didn't have pain. I was under general anestheisa that time. I'm a lightweight with alcohol, but probably pretty normal with pain killers.

With positive blood work, you may choose to skip the biopsy. I'm glad I did mine, because I know how severe my damage was and I've seen the faces of my doctors go from skepticism to agreement when I mention that my celiac was diagnosed via biopsy and bloodwork. I also learned that the reason for my stomach pain was chemical gastritis from all the NSAIDS and antidepressants I was taking to manage my symptoms.

Remember that even if the biopsy is negative, you should remaing gluten free because of the positive blood work. At minimum, do a 3 month very strict gluten free (and lactose free)diet. Really though, the bloodwork has already diagnosed you and you should remain gluten free for life. The biopsy is to confirm it and to look for other problems.

There is no way, I would want to delay the biopsy and have to go back on gluten. That would be torture. Best wishes for a speedy recovery and very few accidental glutenings.
  • 1

#655616 Realization About My Celiac

Posted by on 22 November 2010 - 09:12 PM

I asked my husband for a 2 month trial of a gluten-free house. I found I could isolate my accidental cross contamination better that way. It also greatly reduced my anxiety levels. Then after about 3 months, I started letting him buy his own bread. I taught him about cross contamination, but he still did things accidentally that made me anxious. I don't think he ever got me sick, but watching him touch the refrigerator after his bread made me insane. We slowly added cereal back along with a few other items he would cook for himself. My anxiety and nagging went through the roof. We've been a gluten free house for the past 6 months again while I'm pregnant, and it feels SO good not to have to remind him to wash his hands and don't use that sponge and wash out that cereal bowl better. I'm dreading adding gluten back into our lives after baby is born.

He travels for work and eats out a lot, so he gets his gluten there. He does not whine about the house being gluten free, but I know he feels deprived. Finding Udi's bread has made a world of difference for him because he has sandwiches back again. We have very little prepared food in the house and he finds it hard to figure out what to eat since I usually only cook 1 meal a day. I think just having something prepared to eat is what he misses the most. Not the gluten. Oh, how I wish he could see that 3 items and 5 minutes of microwave time makes a great lunch, but he is blind to anything that isn't ready to eat right out of the package.

The gluten free house greatly improves my sanity and I believe at least a few months trial was a necessary part of the learning curve for both of us. I think you should give it a try and stock up on Udi's.
  • 2

#655527 Thanksgiving Dinner... Dont Cook For Me!

Posted by on 22 November 2010 - 02:37 PM

Tell her you appreciate her thoughfulness and her efforts. Tell her you know how stressful preparing a big meal is. Tell her that you would love to cook WITH her another time, but that this big holiday meal is not the time to practice cooking gluten free. Let her know that you love her and know she loves you and that all you want is her company for the holidays.

I used to tell my mom that I was still learning what made me sick. Let her know that trust isn't the reason you are refusing her food. Tell her how long it took you to learn to cook without accidentally making yourself sick. I'm still learning that one after 2 years. I offer up the example of how easy it is to accidentally grab a spoon and put it in the wrong pot or to have another relative "help" by stirring your dish.

Make plans for another simpler time when you can bring something to pass and the two of you can cook something else together.

My mom wants to cook for me or buy me expensive yucky gluten-free bread. I've gotten so that I tell her one thing she can do to help me with my meal. For example, "Wash your hands when you make hamburger patties and save me a 1/4 lbs still in the container until I get there". Or I ask her to set aside some veggies or fruit still in their packaging for me to prepare when I get there. She feels she is doing something good for her daughter and I'm getting a safe meal.

I made it pretty clear when I was first diagnosed that this disease was my problem to manage and that I would not ask my extended family to accomodate me. I also told everyone that I would no longer be eating their food and it had absolutely nothing to do with my love for them or their cooking. My family's matter of fact style wasn't pretty during my teenage years, but it helped this time.
  • 1

#655516 Need Advice About Medication

Posted by on 22 November 2010 - 02:15 PM

I agree, talk to the doctor's office and get some samples to start you out. Usually there are more than one manufacturer of generics and you can shop around from pharmacy to pharmacy to see which ones don't have gluten. I know it is a pain, but I've been able to locate gluten-free versions of generics that way. I actually was lucky enough to have my regular pharmacy do the research for me one time. If you are stuck with one pharmacy chain, you could have them order a generic version that is gluten-free if you two can work together to find it.

I also like the idea of just subbing in another medication if possible.

The insurance company is ethically wrong and I've been in your situation before. Fortunately, my pharmacist and I were able to find generic alternatives with some research. It may be that the alternative you come up with is an injectable or something that will cost the insurance company more to fill in the long run. I kind of hope so.

Oh, also check different forms of the medication. I had one med I took that had one of my allergens in the liquid and tablet form, but not the pediatric chewable. I was given a script for a large dose of the pediatric chewable instead.

Also, have your doctor call the insurance company directly. I got that same med approved because the doc knew how to work within the insuranc system. Otherwise, they wanted me to pay for all of it out of pocket.
  • 1

Celiac.com Sponsors: