Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Any Advice On Getting Prescriptions Filled Safely?


srall

Recommended Posts

srall Contributor

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



pricklypear1971 Community Regular

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

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

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

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

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

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?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Jmartes71 replied to Jmartes71's topic in Doctors
      6

      Second chance

    2. - trents replied to EssexMum's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Concerning GP advice

    3. - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      327

      Terrible Neurological Symptoms

    4. - cristiana replied to EssexMum's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Concerning GP advice

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,638
    • Most Online (within 30 mins)
      7,748

    CIARAN CONROY
    Newest Member
    CIARAN CONROY
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Jmartes71
      Thats the thing, diagnosed in 1994 before foods eliminated celiac by biopsy colonoscopy at Kaiser in Santa Clara  now condo's but it has to be somewhere in medical land.1999 got married, moved, changed doctor's was with former for 25 years told him I waz celiac and that.Fast forward to last year.i googled celiac specialist and what popped up was a former well known heard of hospital. I thought I would get answers to be put through unnecessary colonoscopy KNOWING im glutenfree and she wasn't listening to me for help rather than screening me for celiac! Im already diagnosed seeking medical help.I did all the appointments ask from her and when I wanted my records se t to my pcp, thats when the with holding my records when I repeatedly messaged, it was down played the seriousness and I was labeled unruly when I asked why am I going through all this when its the celiac name that IS what my issue and All my ailments surrounding it related. I am dea6eoth the autoimmune part though my blood work is supposedly fabulous. Im sibo positive,HLA-DQ2 positive, dealing with skin, eye and now ms.I was employed as a bus driver making good money, I loved it for the few years my body let me do until I was yet again fired.i went to seek medical help because my body isn't well just to be made a disability chaser. Im exhausted,glutenfree, no lawyer will help and disability is in limbo thanks to the lax on my health from the fabulous none celiac Google bay area dr snd team. Its not right.
    • trents
      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
    • Scott Adams
      Here are some articles on cross-reactivity and celiac disease:      
    • knitty kitty
      @HectorConvector, Here are some articles about "dry Beriberi" and neuropathy.  I hope you've been able to acquire thiamine hydrochloride or Benfotiamine.  I'm concerned.   Dry Beriberi Due to Thiamine Deficiency Associated with Peripheral Neuropathy and Wernicke's Encephalopathy Mimicking Guillain-Barré syndrome: A Case Report and Review of the Literature https://pubmed.ncbi.nlm.nih.gov/30862772/ Dry Beriberi Manifesting as Acute Inflammatory Demyelinating Polyneuropathy in a Patient With Decompensated Alcohol-Induced Cirrhosis https://pmc.ncbi.nlm.nih.gov/articles/PMC7707918/ A Rare Case of Thiamine Deficiency Leading to Dry Beriberi, Peripheral Neuropathy, and Torsades De Pointes https://pmc.ncbi.nlm.nih.gov/articles/PMC10723625/
    • cristiana
      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.