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

I Need To Vent Somewhere!


ptkds

Recommended Posts

ptkds Community Regular

Ok, I just have to vent somewhere, and you guys are great listeners!

Over 3 weeks ago, my 11 yr old dd hurt her wrist. I took her in to our doctors office where we saw a PA. They did a couple of xrays and said it was sprained. So we go get a special brace and try to move on. My dd keeps saying it hurt really bad, the brace wasn't helping, and she was crying nearly every night from pain. So I call the pedi's office and tell them how much pain she is in. They say to give her pain pills, and she will feel better in a few days. A few days later, she is still in horrible pain. So I take her into the actual pedi. He does some xrays and still claims it is just a sprain and to keep giving her some pain meds. He said if it wasn't feeling better in a week, he will order some physical therapy. I am thinking that she can't even move it, how in the world would she make it through physical therapy!? I call back and request an MRI. They told me they will not order an MRI because "it isn't warranted". Sunday night, she lost her balance while squatting in the floor and tried to catch herself with her bad hand and hurt her finger, which made her wrist hurt alot worse. So I took her into the ER worried that she did even more damage or something. They did a bunch of xrays and said it was just sprained, sprains hurt, she needs to move it (he even implied that it still hurt because we had it in a brace :angry: ) and to give her some pain meds. I stressed to the last 2 "medical professionals" that the pain meds didn't touch the pain in her wrist. They didn't even listen. A sprained wrist shouldn't be so painful and SWOLLEN after 3+ weeks.

So yesterday I called and requested an immediate referral to an orthopedic. We got up there a few hours later to see the ortho, and he did a special series of xrays. He still didnt see a fracture, but he said that in a child her age, cartlidge surrounds some of the small bones and that can easily hide a fracture. So he immediately put a cast on it. It felt like someone FINALLY listened to what we were telling them.

It ticks me and dh off so much that the other "medical proffesionals" just kept blowing us off. When her wrist was still hurting and still swollen, that should have sent off alarm bells in thier minds. My poor dd shouldn't have been kept in pain for so long.

Oh yeah, and they prescribed her some antibiotics because of an ongong staph infection. She was having some chest pain after takiing the med, and just felt horrible all over. So I called the pedi's office and told them what was going on. They just blowed me off about it and said it was a normal side effect! I refuse to give my dd some med that has such "normal" side effects. She couldn't even go to school because of the way she felt.

Why can't these medical proffesionals ever listen to the patients? They act like they know everything and we are just lying or don't really know what is going on with our own bodies. It just ticks me off.

Sorry it got so long! I think I am done venting for now!


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



Celiac.com Sponsor (A8-M):



Mother of Jibril Enthusiast

Good vent! :lol: I can use some venting too...

I've already had two incidents like this with my son and he's only nine months old!!!

The first time he had "colic," which turned out to be a severe intolerance to casein. He was clearly in pain (crying for hours), projectile vomiting, and having dark green diarrhea. The nurses kept telling me it was "normal," just a "phase" his body was going through. When he started having streaks of blood in his diapers, that was the last straw! At first they tried to tell me I "probably ate something red" (HA... I think I'd remember that)... but when I took the diaper in they tested it for blood. The pediatrician suggested he was "straining" during #2. Really? At six weeks old?? With diarrhea??!? I found some information on the Internet about casein intolerance and took all dairy products out of my diet. He started improving within a few days and was back to normal within six weeks. If I have even a tiny bit of casein he gets terrible eczema across his cheeks.

The second time he was five months old. He started running a high fever (as high as 104 degrees). They told me to give him Tylenol and cool baths. The next day he was vomiting and refusing to eat. On the third day I took him to a pediatrician (a different one) who ran some tests and suggested he probably had a UTI that had become a systemic infection. That night he started making some very strange eye movements (like a seizure, except the rest of his body wasn't seizing), so we took him to the ER. And that's when we found out he had MENINGITIS. That's why they tell you to inform your doctor if your baby has a high temperature!!!! We were in the hospital for three days so they could pump him full of antibiotics in case it was bacterial meningitis.

I still think doctors are useful for some things. If you get the right person they can be a godsend. But... they can also be completely useless. I'm sorry your daughter had so many useless ones.

Cinnamon Apprentice

Wow, that's terrible. I just found out that stress fractures don't show up on x-rays. My 15-year-old fell down the stairs last week and we had the same sort of situation. The x-rays didn't show anything, so we assumed all was well. But day after day he didn't get any better. Then we took him somewhere else and they said that stress fractures don't show on xrays. They told us to give it another week and if it wasn't better to come back.

And meningitis, oh my gosh! What if it was the bacterial type! Thank God you finally got some good care.

Fiddle-Faddle Community Regular

ptkds, that's HORRIBLE. (and Mother of Jibril, too!)

I would suggest that you revise your rant, print it out, and send it to EVERY doctor who examined your child, plus a copy to the insurance company.

You could also ask your local paper's health writer if they'd like to do a story on this. Imagine--giving a child pain pills instead of finding out what's really wrong---GGRRRRRR!!!!!! If the health writer doesn't want to do a story, write it yourself and send it as a letter to the editor.

Heck, you could even contact an attorney about malpractice! Normally, I am against that sort of practice, but I'm starting to think that for some doctors, it's the only way to get them to LISTEN.

I had a pediatrician tell me that my 7-week-old baby had suddenly turned yellow because his father was Japanese (it didn't occur to him that my husband does NOT have yellow skin). I fussed and fussed until he agreed to let me come in, and he STILL thought it was nothing--but he thought he detected a very tiny heart murmur and was sending us to a pediatric cardiologist "just to be safe."

The cardiologist examined him and said, "the reason your son is yellow is because his liver is enlarged--because he's in congestive heart failure."

And let's not forget the orthopedist who misread my X-rays for hip displasia when I was an infant, and said that I'd never walk and would need to be institutionalized....

Sorry, didn't mean to take away from your rant, I'm just so angry on your behalf, it brings back memories of idiot doctors.

curlyfries Contributor

Reminds me of when my DD was helping her daddy make chocolate chip cookies. She got a stomach ache and passed out. The doctor said it was normal for girls to get cramps.

..........She was only SIX YEARS OLD!

Lisa Mentor

Sorry, there are too many shared experiences with doctors. <_<

home-based-mom Contributor

Yup. I can SO relate! We went from doctor to doctor when my daughter was 9 months old because she had such a terrible cough and was gasping for air. But she was chubby and looked healthy and they kept brushing me off as a new first time mom. Turns out she had whooping cough, even though she was up to date on her vaccinations. Apparently none of them knew that as many as 15% of vaccinated people will get it anyway, just not as severely as they would have had they not been vaccinated. She infected who knows how many people and I had to take time off of work because it is still a "quarantine" disease.

It would be nice if more medical professionals gave others credit for having a bit of intelligence.

:angry::angry::angry::angry::angry:


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



Celiac.com Sponsor (A8-M):



JNBunnie1 Community Regular

Me next!

So I was in and out of the doctor's office for months with EVERY SINGLE classic Celiac symptom except the rash. Eventually he sends me to a GI for a scope to make sure I'm not doing too much damage to my colon and the GI tells me, 'Eat more fiber.' :ph34r:

Juliebove Rising Star

Yep. Drs. kept telling me there was nothing wrong with me but they couldn't explain the chronic infections I was having. Then finally when I simply could not walk (diabetic neuropathy), the ER said, "You have diabetes. See your Dr."

Daughter has had wrist injuries and for the most recent one, they said they would assume a break until they could tell otherwise. She had previously broken it.

Another time she had broken finger. Her Dr. said he didn't think there was anything wrong with it but to see the Ortho just in case. He couldn't get her in for two weeks and by then it was pretty much healed.

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. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

    2. - knitty kitty replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

    3. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

    4. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    5. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

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

    • Total Members
      133,259
    • Most Online (within 30 mins)
      7,748

    Hidden Peacock
    Newest Member
    Hidden Peacock
    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

    • suek54
      Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later.  The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied, no chance if recovery there. But I am in touch with some secondaries, so something to bear in mind. .  Niacin B3 Very interesting too. Must have a good read about that.  Im sure lots of questions will arise as I progress with dermatitis herpetiformis. In the mean time, thanks for your help.
    • knitty kitty
      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too.  I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy).  Niacin has been used since the 1950's to improve dermatitis herpetiformis.   I try to balance my iodine intake (which will cause flairs) with Selenium which improves thyroid function.   Interesting Reading: Dermatitis herpetiformis effectively treated with heparin, tetracycline and nicotinamide https://pubmed.ncbi.nlm.nih.gov/10844495/   Experience with selenium used to recover adrenocortical function in patients taking glucocorticosteroids long https://pubmed.ncbi.nlm.nih.gov/24437222/   Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide https://pubmed.ncbi.nlm.nih.gov/30390734/   Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Nicotinic acid therapy of dermatitis herpetiformis (1950) https://pubmed.ncbi.nlm.nih.gov/15412276/
    • suek54
      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
×
×
  • 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.