• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Sick And Frustrated
0

8 posts in this topic

Recommended Posts

Adalaide    361

So it took some time but I think I do reasonably okay. I deal with things as they come up and do really well with laughing things off and taking them in stride when things go poorly. I even joked about how sick I am. I'm pretty competitive by nature and my husband was also sick. Well I was to the doctor today and apparently I have a sinus infection because I had to get sick better than him. B)

Unfortunately I couldn't get an appointment until 2 this afternoon. I knew what that meant when I made it. It meant that most if not all drug manufacturers would be closed by the time I got done. Pharmacists don't have the time, patience or frankly enough of a clue about what the heck gluten is to make a call to see if a drug is gluten free. I wouldn't trust one to call for me. Why? Well, because of the response I got today from Sandoz when I called about my z-pack. (Apparently I've developed an allergic reaction to penicillin, oh lucky me.)

So, there I am in the waiting room using every ounce of breath I can muster to scream into the phone. I barely manage to get my voice above a whisper and have to repeat myself several times to the rep before she understands why I'm calling. Finally, she says that they don't test their final product or certify anything as gluten free. Their supplier has notified them that their xanthum gum is wheat derived but that they consider their final product gluten free. She concludes by telling me that therefore Sandoz considers this drug to be gluten free.

Um... what freaking planet do you have to be from to think you can convince me to take a pill made of wheat?!?! Also, I'm pretty sure any pharmacist who made that call would have told me it was gluten free and I would have filled it and then not been able to figure out why I was getting so much sicker. So I guess that is fair warning to those who trust pharmacists to make that call. Don't.

But anyway. I've about had it. I've been sick since Thursday. I haven't been able to speak for 4 days. I've lost 5 pounds over the weekend. I haven't eaten because my throat hurts so much I can't bear the thought of food. I haven't slept for more than 4 extremely interrupted hours a day since Thursday. And then some moron on the phone makes me repeat myself like 100 times and tells me pills made of wheat are gluten free. I'd scream if I even could!!!

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


kareng    1,992

If you can't get another that you feel safe with, you are choosing to maybe loose your hearing, go into the hospital, pneumonia, suffer for another week or so until it gets so bad you will have to have IV antibiotics?

I would have taken it. At least a couple of doses until tomorrow and the doc coulsd order something else or I could get a different nrand from a different pharmacy.

If there was still wheat in the drop of xantham gum in a pill, its very very very small. I believe xantham gum, from any source, is considered gluten-free as it is so processed. Will see what I can find out.,

Xantham gum is on the safe list. I think any wheat that may have ever been near it is processed out.

Share this post


Link to post
Share on other sites
kareng    1,992

Have you tried a sinus rinse? Like tis one? http://www.walgreens.com/store/c/neilmed-sinus-rinse-original-sinus-kit/ID=prod2598807-product

My son had a sinus infection and it helps alot. More than alot! The ENT said not to use a nettie pot because it sometimes sends the water thru too fast. Use the kind with the squirt bottles. My son says to do it it a hot shower. Its messy and gross.

I think you can get those Cepachol throat srpays that numb the throat. Suck on popsicles.

Cepachol looks gluten-free but chloraseptic says it is

http://chloraseptic.com/en/Resources/FAQs.aspx

Share this post


Link to post
Share on other sites
Jodster72    0

Adelaide:(

Sure hope your feeling better soon!!!!

I know that since all my issues started last year I have mysteriously become allergic to every antibiotic they've tried lol

So I suffer or suffer !!!

Sending you speedy get wells and hoping you can get something else o replace it quickly:)

Jody

Share this post


Link to post
Share on other sites
Ads by Google:


Adalaide    361

I do use a throat spray, it's not particularly effective for more than a few minutes at a time at this point and I am probably using far more than any doctor would be comfortable with me using but whatever. Don't use for more than 2 days? Yeah, got that covered times 2. Spit it out? I'm pretty sure once you've sprayed it directly onto the back of your throat we're way past spitting. If it wasn't safe to actually consume it wouldn't be meant to be put in your mouth. And I'll keep right on telling myself that.

It took feeling like I was on death's doorstep over the weekend to get me to use flonase. I don't do water on my face and frankly unless there is a gun to my head I'm not putting water up my nose. I get that those are great for some people and my best friend swears by them. If they work for someone else I think that's just super. It's just a thing.

I was able to get something I am comfortable taking. I'm gonna be honest though. I'm sicker than I've been in 5 years, in a sick sort of way not a celiac sort of way. I will not risk taking my immune system from hyper drive (which isn't working anyway) to completely whacked out by throwing wheat at it. No matter how "safe" it supposedly is. I'm pretty sure I'm in no state to do any sort of critical thinking and until I can look it up for myself the last think I'll do is trust some random person on the phone getting paid minimum wage to tell me that her company's product is perfectly safe for me and I should buy it. Given a choice between two pills where one is made of wheat and one isn't, I'll take the one that isn't every time. Even if the one that is is theoretically perfectly safe.

Share this post


Link to post
Share on other sites


Ads by Google:


shadowicewolf    166

Oh that sticks :(

I'm allergic to penicillian (and its family), septra (and its family), and azethromaicin. Reactions from any one of those is not fun (first two gave me very bad hives for a week and the last set my body a fire).

Warm tea and honey for that throat should help.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      107,896
    • Total Posts
      938,534
  • Member Statistics

    • Total Members
      65,804
    • Most Online
      3,093

    Newest Member
    Junimoon
    Joined
  • Popular Now

  • Topics

  • Posts

    • Before ordering the endoscopy, you would think they would order the complete celiac panel.  Not all celiacs (like me) ever get a positive TTG (I do test positive to the DGP, but negative to the EMA and TTG).  You would think that the additional blood tests would be way more cost effective than going directly to endoscopy.  The endoscopy usually is still considered necessary for a celiac diagnosis, but there does not seem to be strong evidence that she has celiac disease other than a family history.   Some celiacs are seronegative negative, but your daughter was only negative on just one of the celiac tests.  So, she MIGHT be seronegative.  More investigation is needed.  She is NOT IgA deficient, at least for celiac testing (for celiac disease this test is just a control test).   The DGP test seems to be better for small children.   I do not have the complete health history of your child, but I would seek a second opinion before going to an endoscopy at this time with only one test result.  Try to find a celiac-savvy GI -- one who follows what the American GI Association  recommendations for celiac disease and what the Mayo Clinic or a large celiac research center recommends for testing protocol. https://www.mayomedicallaboratories.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf https://gi.org/guideline/diagnosis-and-management-of-celiac-disease/  
    •   Hello linzk8! I would suggest you to go with natural foods as you are allergic to latex. One of my friends had the same problem. She also had latex allergic. She used Indian nuts to lose weight purchased from the official site of Nuez Dela India and achieved a success. You can also check the same. Eating at the right time is also important. Avoid eating very late at night. It's fine to eat in between meals, but limit your proportions. Never starve yourself! Hope this could help you!
    • My family visited Peru (my 13 year old has celiac) last Christmas, and we found Peru rather gluten free friendly. Peru is the land of corn and potatoes, and they have lots of grill meats.   Their cooking ingredients tend to be naturally gluten-free.   We did the 4 day Inca trail hike to Machu Picchu, and our chef did a great job making gluten-free meals for my daughter.  
    • Most physicians follow the joint commission’s guidelines on prescribing HTN medications which usually begin with a diuretic and calcium channel blocker (the amlodipine) - see below. Is it possible that your bp was still not controlled on the CCB (amlodipine)? So the ARB was added? Again, I’d just like to say that just bc a drug does have certain adverse effects does not mean you will have them, but I understand if you would not even want to take the chance, given a previous history of celiac disease. http://www.aafp.org/afp/2014/1001/p503.html “In the general nonblack population, including those with diabetes, initial anti-hypertensive treatment should include a thiazide diuretic, calcium channel blocker, angiotensin-converting enzyme (ACE) inhibitor, or angiotensin receptor blocker (ARB). In the general black population, including those with diabetes, initial treatment should include a thiazide diuretic or calcium channel blocker. If the target blood pressure is not reached within one month after initiating therapy, the dosage of the initial medication should be increased or a second medication should be added (thiazide diuretic, calcium channel blocker, ACE inhibitor, or ARB; do not combine an ACE inhibitor with an ARB). Blood pressure should be monitored and the treatment regimen adjusted until the target blood pressure is reached. A third drug should be added if necessary; however, if the target blood pressure cannot be achieved using only the drug classes listed above, antihypertensive drugs from other classes can be used (e.g., beta blockers, aldosterone antagonists). Referral to a physician with expertise in treating hypertension may be necessary for patients who do not reach the target blood pressure using these strategies.” Drugs for BP in different classes work by different mechanisms. It may be worth it to print out those huge, long drug information sheets and go over them with a fine toothed comb. As for CoQ10, have you checked for coupons online? Can your doctor write you an Rx and get your insurance to pay? They might say it’s on OTC and you have to pay out of pocket, but it may be worth it to find a way around that - would a prior authorization do the trick? I don’t know, just bringing up the questions. In the report you cited, these concluding words were to me, chilling:
      “Therefore, we suggest the possibility of a class effect.” Losartan, olmeseartan - doesn’t matter. And I'll say it again, there must be a way to disseminate this information more widely as I had no idea about this adverse effect, and never heard any docs speaking about it either. It really warrants wider sharing. Finally, one person who is often an overlooked resource is your pharmacist. They have just tons of knowledge and should be able to talk to you in some depth if asked, in an articulate, easy to understand way. They may even be able to do some digging and research for you. Plumbago
    • Plumbago et al, Thanks for letting me know  about the "artan" drugs being ARBs. I think Cyclinglady was right the Losartan research is not free and thus not public. I saw the link with no abstract but wanted to read it to confirm as you noted in your ETA that it was another "Artan" drug Losartan causing the problem. I believe it is. I found a great (after more digging) review of all the "artans"/ARBs or most of them about whether they can contribute to sprue symptom's in addition to Benicar. here on wiley as studied by the alimentary pharmacology and therapeutic journal (AP&T) for short. http://onlinelibrary.wiley.com/doi/10.1111/apt.14176/full I wish I knew how to post the able alone it is very informative.  Please scroll over the table to the end of it since it even tells how long to expect before your sprue symptom's/conditions improve IF the "artan" drug is causing your symptom's which I find the most helpful thing about the table.  They also note histological feature (degree of villi blunting) to expect on biopsy. They note Losartan can cause "total atrophy of duodenal villi" by their reporting. I also recently had an issue with my potassium levels so I feel sure it is the Losartan. I remember reading a study about how losartan was better at the "chronic cough" I had developed using Lisinopril so I changed to Losartan a few years ago . . . now I find I could of been making my GI symptom's worse. But to answer  your other question since I began taking Folic Acid a few months ago my BP numbers went down to a healthy level of 120/80 or less sometimes . . . but with medicine. I had already been thinking I wanted to try get off the BP medicine (for good) so this is more motivation. C0q10 worked well but it is too expensive for me to take all the time! I called my doctor to have them put me back on Amlodipine/Norvasc and I can't remember why I changed off that medicine to begin with now.  I do remember needing two medicine's back then to control my BP so maybe we stopped the Norvasc instead of the Linsinopril. But now that they have put me back on Norvasc I hope my potassium levels will correct themselves. I just don't feel safe anymore taking Losartan after learning it could be making my GI symptom's worse or causing the to be unreliable. I first thought my touch of D. was from an antibiotic round but when kefir didn't get me back on track I suspected something else when my Vitamin D levels showed up low too again! Thanks everybody for ya'lls great suggestions and good research on my behalf. I also recommend this verywell article if you are still having GI problems and you suspect an "artan" like ARBs BP medicine and looking for a medicine that might have less severe  or more manageable symptom's for your lifestyle because it comprehensively list's the medicine's by drug types. https://www.verywell.com/hypertension-drugs-1745989 no medicine is without a side effect as (I) am learning but I never thought sprue would be one for my BP medicine and why I prefer Vitamins when I can find out which one too take. Now that I have the Norvasc approved as a replacement for the Losartan I might see if my BP goes up again if I stop my medicine all together as I was hoping the Folic Acid might help me with it (without medicine) and it explains why I was low in Folic Acid to begin with again. posterboy,    
  • Upcoming Events