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. - Scott Adams replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      23

      Pain in the right side of abdomen

    2. - Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      23

      Pain in the right side of abdomen

    3. - Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      23

      Pain in the right side of abdomen

    4. - Scott Adams replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      how long does it take for the genetic blood test for celiac to come back?

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

    • Total Members
      133,668
    • Most Online (within 30 mins)
      7,748

    Hope Durbin
    Newest Member
    Hope Durbin
    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

    • Scott Adams
      Vitamin B9 (Folate): The UL for Folic Acid is set at 1,000 mcg (1 mg) per day for adults. This limit primarily applies to synthetic folic acid found in supplements and fortified foods, not naturally occurring folate in food. High intake of folic acid can mask the symptoms of Vitamin B12 deficiency, which can lead to neurological damage if left untreated. This is because folic acid supplementation can correct anemia caused by B12 deficiency without addressing the underlying neurological damage. Some studies suggest that excessive folic acid intake might increase the risk of certain cancers, such as colorectal cancer, particularly in individuals who have precancerous lesions.
    • Heatherisle
      Hasn’t been given folic acid as GP says vit b and folic acid can’t be given together which I find strange cos any time I did venepunctures B12 and folate were always grouped together? Her folate level was 2.2, just below the normal level
    • Heatherisle
      Hi Thanks for your input. Don’t know which exact medication she’s on, keep asking but she keeps forgetting!!! I still think her Vitamin D levels might be low cos she had the back pain and tingling last year( around March /April) and levels were low so she had 3 month course then and it helped. She’s coming home next week (as in to ours) for a long weekend so hopefully some TLC from mum and dad will help!!!    
    • Scott Adams
      Genetic testing for celiac disease (the HLA-DQ2 and HLA-DQ8 genes) usually takes about 3–10 days to come back, depending on the lab your doctor uses, though some places may take up to two weeks. The test itself doesn’t diagnose celiac disease—it only shows whether you carry the genes that make celiac possible. About 30–40% of people have one of these genes, but only a small percentage actually develop celiac disease. However, if the test is negative for both genes, celiac disease becomes extremely unlikely, which is why your doctor mentioned possibly canceling the endoscopy if the result is negative. If it’s positive, it just means celiac remains a possibility and further testing, like a gluten challenge followed by endoscopy, helps confirm it. Since you have an identical twin, it’s definitely useful information to share if the genes are present, because twins share the same genetic risk. It sounds like you found a very thorough GI doctor, which is great, especially since she’s also monitoring nutrients and looking at the whole picture.
    • knitty kitty
      @Heatherisle, You're not a bother at all.   What "Vitamin B medication" is she taking?  Is it just B12 and folate?   All eight B vitamins, Vitamin D and other vitamins and minerals need to be supplemented because the malabsorption of Celiac disease affects all the nutrients.  All the B vitamins work together.  Just supplementing one or two can throw the other B vitamins out of balance causing worsening deficiencies in other B vitamins.  Doctors are undereducated about nutrition.  Heavy sigh. This is worrisome.  These are all symptoms of Gastrointestinal Beriberi caused by Thiamine deficiency.   An Erythrocyte Transketolace Activity Assay needs too be done to check her Thiamine level.  But because this test is so expensive and takes so long for the results to come back, it's much simpler to administer 500 mg Thiamine Hydrochloride several times a day for several days and look for health improvement (WHO recommendation).  Doctors can administer Thiamine Hydrochloride by IV along with a "banana bag" with all the B vitamins in it.  (Riboflavin gives it the yellow color.).  I've experienced vitamin deficiencies which my doctors didn't recognize.  When thiamine and B12 deficiencies started affecting my brain function, my doctors wrote me off as a depressed hypochondriac.  I had Gastrointestinal Beriberi myself.  I took over the counter thiamine hydrochloride at home and had health improvement within an hour.  High doses (500 mg) of Thiamine are needed to "jump start" the body into proper functioning.   Apologies if I was curt.  I get very frustrated because the nutritional deficiencies that occur with Celiac disease are not addressed properly.  All I can do is tell people about what I learned on my Celiac journey.  Have you visited my blog?  Tap on my name, look for pull down menu Activities and go to blog.   I do hope your daughter can get the nutritional support she needs.  I'm very worried.  Please keep us updated!
×
×
  • 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.