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How Do You Get Your Doc To Help

Nan2N

By Nan2N
in Doctors

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Nan2N Explorer
Nan2N
Posted

My regular GP doesn't seem to take much of my problems seriously. Especially since my symptoms started as anxiety and moved on from there. Now that I've been diagnosed and am severly malnourished he still doesn't know what to do next. I've read a lot on here about other problems people experience like candida and vitamin deficiencies, etc. and I have no idea how to get my doctor to check for all of these. Is this something you've had to do on your own? I really don't know where to start, but would like to check everything and feel healthy again. I don't want to miss anything that might contribute to more problems, yet my doctor doesn't seem too concerned other than "eat a gluten free diet". Any suggestions would be appreciated. Maybe a nutritionist? (It's kind of hard to switch docs around here, as the good ones aren't accepting new patients)

Thanks

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Joni63 Collaborator
Joni63
Posted
My regular GP doesn't seem to take much of my problems seriously. Especially since my symptoms started as anxiety and moved on from there. Now that I've been diagnosed and am severly malnourished he still doesn't know what to do next. I've read a lot on here about other problems people experience like candida and vitamin deficiencies, etc. and I have no idea how to get my doctor to check for all of these. Is this something you've had to do on your own? I really don't know where to start, but would like to check everything and feel healthy again. I don't want to miss anything that might contribute to more problems, yet my doctor doesn't seem too concerned other than "eat a gluten free diet". Any suggestions would be appreciated. Maybe a nutritionist? (It's kind of hard to switch docs around here, as the good ones aren't accepting new patients)

Thanks

Hi Nan2N,

My GI Doctor was like that. I told him I felt lousy and all he did was take a blood test and when everything came back normal, that was the end of it. In his eyes none of my problems could be Celiac related. I went back to the GP (in my group of GP's) who seemed to listen the best. I checked out a book from the library and took it in on my last visit. I was about at my wits end from lack of sleep, fatigue, and tinnitus. I told her "I need help" and "I've been researching Celiac Disease and I found some things that might help me." She listened and did a more in depth blood test for different vitamins and a full thyroid panel, even though my TSH is in normal range. I'll get the results Monday. But the important thing is that I think it helps to take in some kind of information with you. You can print our articles or ask other's here for suggestions for good books and see if your doctor will listen and help you. If not, I'd say you really need to find a new one because most of them seem to know very little about Celiac and if they aren't open to suggestions and the information you try to provide to them, they will never help you. At least that has been my experience.

Did they take any tests to confirm your malnutritioned? Maybe taking in articles on the typical vitamins Celiacs don't absorb would be a good starting point. A good doctor will listen and try to help you, not brush you off.

Nan2N Explorer
Nan2N
Posted
  • Author

Hi

No my doctor didn't even mention checking for vitamin defiencies or anything. I was literally crying to him because I cannot afford to lose another pound and can't stand the way I look. He asked me if I had any history of anorexia!!! Please!! So I don't know what to do now. When I had my biopsy my GI doctor said to change my 2 week follow up to 2 months. I guess I'll have to call again for another appt. to try and get somewhere. It's so obvious I'm malnourished, but my GP thinks I'm not eating because this whole thing started with anxiety and depression so I must just be a head case and doing it to myself. Even though it's confirmed I have celiac. And my hairs falling out. Why on earth would I want to do this on purpose. Just don't get it. I told him I have been eating and yet I still lose pound after pound. Hopefully my body will recover enough to at least not lose anymore. I'm definintely giving it my best shot. But I will call to have my levels checked. Thanks for the info!

Arti360 Newbie
Arti360
Posted

Isn't it so frustrating????? I've been calling my GI doc, she's too booked to see me any sooner than 1 month out...pounds are falling off, AGAIN, stuff isn't right. I felt so bad the other day from all my food racing through me that I had to go to the ER and all the the doc there said was to follow a gluten free diet!!! How bizarre. He wanted to give me valium! He thought that I just had a stomach bug of some kind. It is so very hard for us to find good help!

sneezydiva Apprentice
sneezydiva
Posted

I hate to say it, but if you are a woman and married, the easiest way is bring your husband into the exam room with you. Doctors, especially male doctors really sit up and take notice when you do that. And they don't give you crap or condecend you when your husband is there. That is how I got all my food allergy testing done when the doctor was relectant to do any ("it's rare in adults, yadda yadda yadda") and my celiac blood tests from the gastro.

If you aren't married, anyone who can vouch for you that you do eat a lot, but are still losing weight in spite of it would probably help.

motif Contributor
motif
Posted

just fire your doctor, like I did and take your health in your hands.

flourgirl Apprentice
flourgirl
Posted

If you have options about another doctor, that would be my first choice. I found a female doc that I just adore. She admits when she doesn't have enough info., and does not get offended when I bring books and information to make suggestions about what tests to do and when. She has sent me to "specialists" who, in my opinion were a waste of time. THE area celiac specialist told me that malabsorbtion of nutrients had nothing whatsoever to do with my low blood pressure/ irregular heartbeat or extreme pain and pressure under my sternum. I did not go back! Anyway, a great reference is Dr. Peter Green book on Celiac Disease. There are others out there, but he covers a lot of ground, and has the background to know what he's talking about.

One good piece of advice (in light of the lack of knowledge out there), is to take control of your own health. Learn as much as you can, and then learn even more. You can ask for tests that you think you need, be specific if you can. Write down lists of symptoms, questions, whatever to take to your appointments. Learn what it is you need to do, and then stick to that as best you can. Good luck, hope you find good health quickly!

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    • cristiana
      Feel like I’m starting over

      By cristiana · Posted

      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
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      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
    • Wheatwacked
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      By Wheatwacked · Posted

      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped.  It sounds more like you are suffering from malnutrition.  Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here.  Malnutrition can cause SIBO, and SIBO can worsen malnutrition. Another possibility is side effects from any medication that are taking.  I was on Metformin 3 months before it turned me into a zombi.  I had crippling side effects from most of the BP meds tried on me, and Losartan has many of the side effects on me from my pre gluten free days. Because you have been gluten free, you can test and talk until you are blue in the face but all of your tests will be negative.  Without gluten, you will not create the antigen against gluten, no antigens to gluten, so no small intestine damage from the antigens.  You will need to do a gluten challange to test positive if you need an official diagnosis, and even then, no guaranty: 10 g of gluten per day for 6 weeks! Then a full panel of Celiac tests and biopsy. At a minimum consider vitamin D, Liquid Iodine (unless you have dermatitis herpetiformis and iodine exasperates the rash), and Liquid Geritol. Push for vitamin D testing and a consult with a nutritionist experienced with Celiack Disease.  Most blood tests don't indicate nutritional deficiencies.  Your thyroid tests can be perfect, yet not indicate iodine deficiency for example.  Thiamine   test fine, but not pick up on beriberi.  Vegans are often B12 deficient because meat, fish, poultry, eggs, and dairy are the primary souces of B12. Here is what I take daily.  10,000 IU vitamin D3 750 mg g a b a [   ] 200 mg CoQ10 [   ] 100 mg DHEA [   ] 250 mg thiamine B1 [   ] 100 mg of B2 [   ] 500 mg B5 pantothenic acid [   ] 100 mg B6 [   ] 1000 micrograms B12 n [   ] 500 mg vitamin c [   ] 500 mg taurine [   ] 200 mg selenium   
    • NanceK
      My only proof

      By NanceK · Posted

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
      Feel like I’m starting over

      By Wheatwacked · Posted

      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
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