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Is My Doctor Just Making This Up?

cdog7

By cdog7
in Doctors

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cdog7 Contributor
cdog7
Posted

I'm still trying to find out if I am Celiac or not, but so far signs point to yes. My mother was diagnosed, and I'm currently suffering from the same symptoms she had (diarrhea, fevers, fatigue, weight gain, frequent gas, malnutrition symptoms, depression, etc.). But when I see my doctor, he says the only Celiac-like symptom I have is the diarrhea, which he says isn't even quite 'it'. He insists that I should be losing weight rapidly and have a much lower iron count if I were Celiac. Just yesterday I was able to twist his arm into giving me the antibody blood test, so we'll see what that brings.

What do you all think, do I need a new doctor or does this guy sound on the level? If I need someone new, it would have to be in Maryland, hopefully near Baltimore.

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AllisonD128 Newbie
AllisonD128
Posted

Well have you tried going gluten free just to see if you feel better? I never went to a doctor, I just changed my diet and felt better. I would listen to how I feel over what my doctor says any day. I've had more than one doctor give me a wrong diagnosis or ignore my symptoms and now it's almost like you have to do your own research and be your own doctor. But, also it won't hurt to get a second opinion, right? Maybe going a GI would be better for you.

RiceGuy Collaborator
RiceGuy
Posted

The previous poster took the words out of my mouth. Try the diet, and if you want tests, get a new doctor.

Ursa Major Collaborator
Ursa Major
Posted
diarrhea, fevers, fatigue, weight gain, frequent gas, malnutrition symptoms, depression

All of the above are common celiac disease symptoms, including the weight gain. Your doctor doesn't know what he is talking about.

Half of the people with celiac disease will gain weight, not lose it, as weight gain can also be a sign of malnutrition. And again, anemia is one POSSIBLE symptom of celiac disease, but not nearly all of us have that problem.

To claim you can't have it because you don't have the symptoms your doctor focuses on (out of over two hundred possible symptoms) is just plain ignorance.

cruelshoes Enthusiast
cruelshoes
Posted

You may want to point your doctor toward this information:

https://www.celiac.com/articles/1077/1/39-o...bese/Page1.html

Celiac.com 11/29/2006
cdog7 Contributor
cdog7
Posted
  • Author
Well have you tried going gluten free just to see if you feel better?........ But, also it won't hurt to get a second opinion, right? Maybe going a GI would be better for you.

I was nervous about going gluten-free just yet because I know it could skew test results. Since I've missed so much work from being sick so often, I'd love to get a doctor's diagnosis to show my boss. But good idea to go to a GI. Thanks!

cdog7 Contributor
cdog7
Posted
  • Author
Your doctor is only working with what he learned in medical school, much of which has been shown to be untrue in recent years.

Thanks for the links!! It makes me pretty mad. I told my mother what he said and she suggested posting here

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nikky Contributor
nikky
Posted

weight loss and weight gain can both be symptoms, so dont worry, a lot of family doctors arent very familiar with coeliac

its good that you finnally got your doctor to agree to give you the anti-body checks, many people do get low iron counts and low calcium and things like that, i had iron deficency anemia but my calcium is always high (i recently discovered i have hypercalcemia), which shows that just because you have coeliac doesnt mean that you have to have vitamin and/or mineral dificiencies

buffettbride Enthusiast
buffettbride
Posted

Your doctor, like many, isn't quite on. If diarrhea and rapid weight loss were the only symptoms, my daughter never would have been diagnosed--and if so, much later after malnutrition had stunted her growth severely.

I'm glad you were able to convince him to run the antibody test. The first indicator to a doctor, IMO, about running Celiac tests would be to know if there is a family history of the disease since it is so genetically linked.

Anyawy, don't hesitate to look for another doctor if you don't feel you are getting the care you want and deserve--whether Celiac is your diagnosis or not.

jayhawkmom Enthusiast
jayhawkmom
Posted

I'm one of those who were "nutritionally compensated."

I could NOT lose weight for the life of me, UNTIL I started a gluten free diet. I carried around extra and unnecessary weight for a very long time. Going gluten free finally ALLOWED my body to shed the extra is was hanging on to for dear life.

Your doctor is wrong. Period.

JulesH Rookie
JulesH
Posted

My idiot GI actually told me that I "probably have a mild case" and therefore should eat some gluten, just not a lot. (I dropped him after he told me that.) But his reasoning was that I weighed more than 70 lbs. And I even had lost weight. Apparently dropping 15 lbs in 2 weeks isn't enough to be considered a real case. :rolleyes:

mamabear Explorer
mamabear
Posted
I was nervous about going gluten-free just yet because I know it could skew test results. Since I've missed so much work from being sick so often, I'd love to get a doctor's diagnosis to show my boss. But good idea to go to a GI. Thanks!

Hate to rain on your parade, but I have found WAY too many GI specialists who cannot think outside the box, and if the tTA is not positive, they abandon further thought. Alas, also too many FP's and IM's have not taken the time to read about THE MOST COMMON DISEASE OF MALABSORPTION in the Western Hemisphere!! There truly are more educated people on this Forum than in the AMA.

BUT! Not to be too negative.....go on and see a GI, but check with a local celiac group for specific doctor recommendations. They should know best in you area WHO will take thye time and listen.

cyberprof Enthusiast
cyberprof
Posted
I'm still trying to find out if I am Celiac or not, but so far signs point to yes. My mother was diagnosed, and I'm currently suffering from the same symptoms she had (diarrhea, fevers, fatigue, weight gain, frequent gas, malnutrition symptoms, depression, etc.). But when I see my doctor, he says the only Celiac-like symptom I have is the diarrhea, which he says isn't even quite 'it'. He insists that I should be losing weight rapidly and have a much lower iron count if I were Celiac. Just yesterday I was able to twist his arm into giving me the antibody blood test, so we'll see what that brings.

What do you all think, do I need a new doctor or does this guy sound on the level? If I need someone new, it would have to be in Maryland, hopefully near Baltimore.

I am on the other side of the country, but if you need Baltimore, you are very lucky Open Original Shared Link

Dr. Fasano is there and the center is supposed to be good.

~Laura

Katrinm Newbie
Katrinm
Posted

The same thing happened to me. I went to a food allergist and he said because I had weight on that I couldn't be celiac. Even though I told him that the weight gain had happened in the last four or so years with a lot of the other symptoms.

One thing I did after that allergist is keep a food log. Everything that went in my mouth and how much I exercised was put on an excel sheet. This way I could hand it to the doctors and show them my concern.

Its so frustrating but you have to be aggressive with the doctor and do a lot of self help.

Guest Happynwgal2
Guest Happynwgal2
Posted
I was nervous about going gluten-free just yet because I know it could skew test results. Since I've missed so much work from being sick so often, I'd love to get a doctor's diagnosis to show my boss. But good idea to go to a GI. Thanks!

I was tested a full month AFTER I went gluten free, and my test results were so off the page that there was NO DOUBT that I was gluten intolerant, or rather, I was a Celiac. So if you are sick enough, like I was, a blood test could be positive even after a month off gluten.

Good luck! :)

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      Feel like I’m starting over

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      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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      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   
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    • Wheatwacked
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      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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