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Any Advice On Getting Prescriptions Filled Safely?

srall

By srall
in Coping with Celiac Disease

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srall Contributor
srall
Posted

Today I took my little girl to the doctor and she was diagnosed with strep. This is the first time in over a year she's needed any medication AT ALL since she's gone gluten free. She's also corn and dairy free. The corn is an allergy. By the time we got to the pharmacy we waited for 45 minutes while the pharmacist called the manufacturer to check on ingredients for us. I said to them that surely I cannot be the only parent with this issue they've come across. They said most parents just don't worry about the medication.

And of course I course I got the "Does she have celiac or is it "just" gluten intolerance?" question. That always drives me crazy...the symptoms are the same for her...she cannot have gluten.

I ended up getting zithromax for kids (in a syrup). The manufacturer said it *might* have corn in the food dye they use but I just ended up taking it at that point.

But it got me thinking, I should be more prepared next time. I guess I foolishly was counting on doctors and pharmacists to know the options. I was the one reading the ingredients at the pharmacy.

Just wanted to add that before she was diagnosed with all her allergies and intolerances she had strep constanstly and was always sick was something. We haven't even taken advil in the past year. So, the diet is really helping her health.

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pricklypear1971 Community Regular
pricklypear1971
Posted

There are gluten and corn allergy medicine lists out there - google it.

Of course, you should always use it as a starting point and verify with the manufacturer. I know corn is worse to work around than gluten.

Perhaps a compounding pharmacy could help?

YoloGx Rookie
YoloGx
Posted

I think Prickly Pear is right. A compounding pharmacy is a good idea.

If you have the cash sometime you might want to consider employing a naturopath. They are more likely to be with it concerning these issues as compared to the standard AMA practices. You just might find there are alternatives for treating the strep -- or at least something that might help prevent it in the first place.

By the way, I have been reading that both children and adults can be helped by eating more live cultured foods that you make at home. You don't have to follow the GAPS diet to get results. Just stay off the allergens and gradually increase the kinds and amounts of cultured foods like home made sauerkraut in your daughter's case. You can also make cultured nut milk yogurt or kefir (in case your daughter is OK with nuts like coconut milk or almond milk for instance). It is better to make it at home since otherwise its likely to be pasteurized which then kills of all the good bacteria your body craves. It also is easy to do and costs hardly anything at all this way too.

The reason it may be needed is that so many of us don't have adequate flora in our intestines for good health due to all the antibiotics. Your daughter may be a case in point. Although she is much improved, she might be able to avoid getting strep etc. at all if her flora was better...

Bea

BabsV Enthusiast
BabsV
Posted

How frustrating...and I'm surprised the pharmacist asked you that question...really not any of their business, right?!?!

Do you have another pharmacy option? My main pharmacy has been excellent -- when I called after diagnosis to check on the meds I was currently on (I have a dust allergy that manifests with asthma-like symptoms) they were happy to check the medicines and it only took about 5 minutes. They also tagged my account as "NO GLUTEN" so that every time something gets filled the system reminds them to check for gluten in the medicine. I can say that I also had a really bad experience at another pharmacy (slack-jawed response of "I don't know if it has gluten in it" with no offer to check?!?!?!) when I was getting a one time Rx filled. Will never go back to that one, ever!

srall Contributor
srall
Posted
  • Author

I agree with the idea of a naturopath. I actually have a name but since all our health issues resolved after the big diet change, I haven't had cause to go. Now I think I'll make an appt. And we do take a probiotic. Maybe we just were lazy over the holidays and got zapped. I was sick this weekend too with my first cold in 2 years, but didn't have the same symptoms as my daughter.

The pharmacy was wonderful. They did flag her chart with the allergies and intolerances, and the computers flag a medication if it was a problem. The pharmacist just opted to call the manufacturer to be safe. I just figured that it would be a little easier. Silly me. Have I learned nothing?

I'll try and find a compounding pharmacy and will give that naturopath a call. Thanks for all the advice.

kareng Grand Master
kareng
Posted

For anyone else reading this....

DO NOT TAKE THE MEDICINE HOME UNTIL YOU ARE SURE IT IS gluten-free!

If you take it home & then call the manufacturer, you cannot return it & get your money back. Your insurance will not pay for a second medication when they just gave you one. IF it is a pain killer, you likely can't get another because of laws regulating narcotics. Just asking for a second perscription for a pain med can get you on a "narcotic seeker" list in some places. (Means you are abusing them)

IrishHeart Veteran
IrishHeart
Posted

They said most parents just don't worry about the medication.

And of course I course I got the "Does she have celiac or is it "just" gluten intolerance?" question.

Wow, you're so good :) --how'd you keep from sarcastically saying, "Well, they should!"??

As for the silly question about gluten....OY! :rolleyes:

You're a diligent Mom and kuddos to you for keeping your daughter safe!

One company that answers questions quickly about meds is TEVA pharmaceuticals. I had to take a med post surgery briefly --and they answered me quickly with reassurances there was no gluten.

I am guessing the corn is more difficult for you because if they do not use wheat filler, they resort to corn starch?

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    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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