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I Am So Mad!


mommyto3

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mommyto3 Contributor

I can't believe how uneducated some doctors are! It's scary....

Lately my husband has been breaking out in really bad rashes around his armpits that are super itchy (he hasn't switched soaps or deoderants or anything like that). The skin eventually breaks in places as he scratches and then the rash kind of scabs over in places but is still really angry looking and inflamed. He used to get this behind his knees periodically and we always felt it was related to food because it would flare up a couple of hours after eating. The armpit rash is the same but just in a different place....

Last year both me and my son were diagnosed with Celiac and my husband's father also has the disease. Yesterday my husband went to our gp and showed her the rash and asked to be tested for Celiac. Her answer was an absolute NO because he doesn't have gut symptoms. She said there's no way he could have celiac without gut symptoms and when he tried to explain that many people with Celiac do not have gut symptoms (our son included) she got irritated and told him the test would be a waste of money and she wasn't ordering it. She gave him steroid cream and sent him on his way without even making an attempt to try to figure out the cause.....

I am so upset by this. Our doctor is often closed-minded to suggestions from patients (she hates it when you try to give any insight into your condition) and she's a pharmaceutical pusher. But to go so far as to refuse to order a simple blood test when two direct relatives have the disease? That is just ridiculous. We have considered switching doctors before but it's hard to find GPs where we are (Canada).

I just can't believe a doctor could be so misinformed and petty.....just had to vent!


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Monklady123 Collaborator

Yeah, some doctors don't seem very responsive. -- Maybe in your dh's case he should just go gluten free with you and your ds. He doesn't need the blood test to try it, see if his rash goes away. Then if it doesn't you'll know to look at something else.

cdog7 Contributor

Arrgh, I feel your pain! It really is maddening, and scary. I encountered a lot of this kind of ignorance from doctors when I was trying to get diagnosed, and honestly it still enrages me.

If it is possible to switch doctors, I think it might be worthwhile. It's of course worth trying to get a diagnosis, but you and I know how difficult that is made for us, meanwhile we're in pain or sometimes losing time at work, etc. He could always try the gluten-free diet for a trial run to see how he feels after at least a couple weeks (maybe up to a month). But even if this works, having a doctor that will actually listen to your symptoms, at least believe him if/when he says 'gluten intolerant', it could be important down the line when they prescribe him anything for instance.

Good luck!

kareng Grand Master

Maybe he should take the rash to a dermatologist to get a biopsy next to the outbreak.

My GYN nurse practitioner know more about celiac disease than the GI that did my endo. She suggested that we see younger GPs or internists. They are more likely to have been taught something about celiac disease.

frieze Community Regular

...and in canada, isnt there a legal/monetary advantage to having the "official" dx??

mommyto3 Contributor

...and in canada, isnt there a legal/monetary advantage to having the "official" dx??

I think you can claim the Celiac on your income tax so you get a deduction for the extra cost of food but from what I've read, they make it so difficult to calculate/corroborate that the effort isn't worth it for most.

I really am considering switching doctors. The only trouble is that there are 5 of us including me and my husband and finding a doctor to take on that many patients (let alone 1) is hard.

Thanks for the suggestion to ask a dermatologist but I doubt she'd even give the required referral. We're hoping that the naturopathic MD we see for allergies will test him. He's very open to most things and doesn't have the usual "god complex" that most MDs have.......

Cypressmyst Explorer

My husband has the same rash. It seemed to get worse on the underarms with certain deodorants but we have noticed since going gluten-free and working to fix his adrenals he no longer has this problem.

Going gluten-free is the best test you can do, hands down. The ignorance and attitude of most Docs is appalling!


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cassP Contributor

it's a combination of being trained by schools run by pharmaceutical companies.. but also not being trained in every specialty. she's a GP- so, she's not gonna know every detail of every area... my GP is the same way. just the other week my Gyno told me that it was completely okay for me to go on Orthocyclen even tho im on Synthroid... and this week i asked my Endocrinologist- and she said no, and explained the hormones in great detail. so... whats my point???? ummm

ya, i understand... i often have to really really speak up for myself.. maybe your husband should just lie and say he has "D" all the time. sometimes you have to speak in "their" language

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    • trents
      @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. 
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      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
      @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
      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 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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