Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Doctor Shocked At My Refusal For Biopsy

foodiegurl

By foodiegurl
in Doctors

Recommended Posts

heathen Apprentice
heathen
Posted

You absolutely have the right to refuse a biopsy, but i don't think he can give you the "official" diagnosis without a positve gold standard test, especially if you aren't very symptomatic. also, i had an endoscopy and colonoscopy after my positive blood test, and the GI doc found a pre-cancerous polyp--probably saved my life since no one looks for colon cancer in an otherwise healthy person in their 20s. yes, the prep sucks, and you have to take a day off work, but it would be nice for you to know how much damage has been done and if you have responded to the diet.

  • 1 month later...
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


knittygirl1014 Rookie
knittygirl1014
Posted

I've seen a lot of doctors in the last few years, and I think their attitude is the most important indicator of how good of a doctor they are! If they are not willing to listen to you and treat you like a person, imagine what they will do in the future when you have more questions or something else go wrong. The same thing!

I was actually seeing a rheumatologist who gave me the option of getting the biopsy or just going gluten free. But the most important thing was that she was supportive and made it MY decision. (I didn't get the biopsy) My primary doctor is also very supportive, saying things like "well if you feel better, that's what's important!" And she didn't harass me about my weight gain either, when most doctors would. She knew that I was absorbing food again and it was pretty normal. I'm kind of glad I don't have a diagnosis on paper now, since my employment situation is uncertain and I may have to purchase insurance in the future. I don't want to get denied for a pre-existing condition.

There are plenty of doctors out there that are willing to work with you without their "gold standard."

  • 2 months later...
050321 Newbie
050321
Posted

I'm wondering what doctor you went to because I went to the GI at Northwest Community in Arlington Heights and they practically did the same thing to me. When I went in to discuss my symptoms with them, I told the nurse that I thought I might have Celiac because I had almost all the symptoms. She told me that Celiac is extremely rare and that I don't have it. I was so angry because it's not as rare as once thought and she didn't even offer any test. She told me that I have IBS and that was it and wouldn't provide any information about Celiac or my options. Seriously, you're not going to even offer a blood test?! I know you're not supposed to start a gluten free diet without diagnosis, but I've been gluten free for two months now and my life has completely changed. I don't know if I feel like going back to the doctor and I don't know if I can even be diagnosed now because of my diet, but I also don't want to not eat gluten for the rest of my life without proof. But, I guess my health is proof enough, right?

mushroom Proficient
mushroom
Posted

I'm wondering what doctor you went to because I went to the GI at Northwest Community in Arlington Heights and they practically did the same thing to me. When I went in to discuss my symptoms with them, I told the nurse that I thought I might have Celiac because I had almost all the symptoms. She told me that Celiac is extremely rare and that I don't have it. I was so angry because it's not as rare as once thought and she didn't even offer any test. She told me that I have IBS and that was it and wouldn't provide any information about Celiac or my options. Seriously, you're not going to even offer a blood test?! I know you're not supposed to start a gluten free diet without diagnosis, but I've been gluten free for two months now and my life has completely changed. I don't know if I feel like going back to the doctor and I don't know if I can even be diagnosed now because of my diet, but I also don't want to not eat gluten for the rest of my life without proof. But, I guess my health is proof enough, right?

A lot of these medical "professionals" are so out of date as to be archaic, and really belong in a fossil museum. :o One could laugh at them if it were not for the harm that they do. So many people have been denied the opportunity of a correct diagnosis, instead of this IBS crapola, by their refusal to test. So the patients figure it out for themselves and go gluten free, and then they say, Oh, you shouldn't have done that because now you can't be tested :unsure::rolleyes:

There is absolutely no rule that says you have to have a doctor's permission to start a gluten free diet. It's your body, and your life, and you have to do whatever is necessary to take care of yourself. Yes, I would say your response is proof enough that gluten was harming you, and whether it is full-blown celiac, or gluten intolerance, the treatment is identical--exactly what you are doing. And, surprise, surprise, you no longer have IBS!!! You and I are rowing the same boat so do not feel alone. You are correct that you have to be eating a full-on gluten-filled diet for at least 2-3 months prior to any testing having a chance of being accurate, and I, like you, was definitely not prepared to do that. But I definitely would let those dinosaurs in Arlington Heights know that the gluten free diet cured your "IBS" :lol: and that you no longer need their help with that problem. However, you do need to go to your PCP and have testing for nutrient deficiencies; the most common ones to test for would be Vit. B12, folate, D and K, and also the minerals calcium, zinc, magnesium, and have your ferritin (iron) level checked. You run the risk of anemia and osteoporosis, among other things, if these levels are low. Hopefully your PCP will cooperate when you tell her your story. Read what you can on these boards and you fill find evidence to print out to back up your request. (Do an on-site google for discussions on these subjects and check out all the information at celiac.com.)

oneonone72 Newbie
oneonone72
Posted

I was told by my GP's nurse that I tested positive for Celiac 2 weeks ago, so this past Friday, I met with a GI Dr. Basically, I paid him my co-pay to be told what I already knew. And then he told me I *need* to have a biopsy, even though all the blood work was positive (I need to ask for exact numbers, but I know that all tests were positive - though he said they were "mild"). I told him, I really didn't want the biopsy. He asked why. I said, because I felt it was invasive, and not even 100% accurate, so I didn't see the point.

He went on to tell me, and I quote, "It is the gold standard..." I still said, that at this time, I would rather do a gluten-free diet (even though I don't really have any symptoms to begin with). Finally, we agreed, I would do that and come back in a month or 2.

I asked him if other people refuse the biopsy, and he told me no, I was the first one. I have a difficult time believing this.

What really got me though, was when I would ask him questions about Celiac, he would respond that he can't really answer anything "until I have the biopsy"...even general questions about the disease. I was so annoyed.

And then he goes on to tell me how since I am a vegetarian, I am going to have a really tough time, and walks out the door. Oh gee, thanks Dr...way to give me confidence and be supportive. Personally, I am pretty proud of the fact that I am a vegetarian (who occasionally eats fish, so really a pescatarian if you want to get technical =)

Anyway..has anyone else experiences this...a Dr who basically doesn't want much to do with you until you get the biopsy so you can become a bona-fide statistic??

I am just outside of Chicago, and moving back into the city this year. I know University of Chicago has good Celiac Drs, so I was thinking maybe I will find one here, but then I am thinking..they may not want anything to do with me either, until I agree to the biopsy :(

I was diagnosed Aug. 2007. I never had any of the usual symptoms. However, I did notice my jeans were hanging awfully low on hips. I was always pulling them up. What I didn't realize was that I was losing weight. I faithfully walked every day for many years. I just thought the weight loss was from that. My celiac was discovered when my family doctor did my yearly cholesterol test. The tests showed that my liver enzymes were higher then normal so she had the test repeated again after six months. When the results came back, the enzymes were still high. She repeated the blood test again after six months and the enzymes were still. I finally suggested to her that maybe it was time to see a specialist. She agreed. My gastroendocrinologist was very knowledgeable. He said he was taught in med-school to ALWAYS do a celiac panel (blood work) on a patient. When that came back positive he still wanted to do an endoscopy. The results were 100 percent that I had celiac disease. I guess you have to find the right doctor who is knowledgeable about the disease.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,300
    • Most Online (within 30 mins)
      7,748
    Liss28
    Newest Member
    Liss28
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      Ocd making gluten fears unmanageable. Need advice

      By Wheatwacked · Posted

      How high is too high?  I take 10,000 IU vitamin D3 every day.  My blood is stable at 80 ng/ml (200 nmol/L).  Even at 10,000 a day it took 8 years to raise it to 80.  Higher levels of 25(OH)D in blood can moderate the autoimmune attack.  Vitamin D Is Not as Toxic as Was Once Thought Lower vitamin D levels have also been associated with increased OCD symptom severity.  This is a most dangerous popular belief. As mentioned you are suffering from vitamin and mineral deficiencies.  Part of the recovery, that is never explained by doctors, is replenishing your deficits.  Celiac Disease is a disease of malabsorption.  The Western diet is a diet of deficiency.  That is why many processed foods are fortified.  Gluten free foods are exempt.   "I’ve been completely asymptomatic since diagnosis."  There are 200 symptoms that can be caused by Celiac Disease and the malabsorbtion it can cause.     • "Floating, undigested stools for over a year now. Dont think its related to celiac as it was like this since im 17 and not 13-16( i got diagnosed at 13). " Many are misdiagnosed as gall bladder disease.  Choline is needed to create the bile salts needed to digest fat.  90% of our population is deficient.  Eggs and beef are the best source.  The RDA (minimum daily allowance is 500 mg to 3500 mg daily.  One egg has 27% DV.  Broccoli, chopped, boiled, drained, ½ cup only has 7%.  Low choline can cause Non Alcoholic Fatty Liver Disease.   Choline and Risk of Neural Tube Defects in a Folate-fortified Population; Could we be overlooking a potential choline crisis in the United Kingdom?;   Choline was formerly called vitamin B4.  I prefer phoshphatidyl choline for supplementation as it is the form we get in food.   • Chronic back pain started gradually, worsens with movement, lots of cracking/popping sounds.  Vitamin D deficiency may be linked to chronic back pain, But I took levothyroxine for slightly low FT4 levels.  I supplement Iodine by taking Liquid Iodine.  50 mcg per drop.  The RDA is 150 mcg to 1000 mcg in the US.  In Japan it is 150 mcg to 3000 mcg.  I take 600 mcg a day. Since 1970 the intake of iodine has decreased in the US by 50%.  Hypothyroidism has increased 50%.  Insufficient iodine leads to the thyroid gland working harder to produce these hormones, and if it cannot keep up, hypothyroidism can develop, according to the Mayo Clinic.   Iodine Insufficiency in America: The Neglected Pandemic.   I see improvement in muscle tone, healing, brain fog since taking the Liquid Iodine.  I could not eat enough seaweed. B1 stops the cramps in my feet B6 speeds up gastric empying and works on my freezing toes at night.  250 mg several times a day sometimes.  Also seems to be helping bowel regularity. 5 mg Lithium Orotate helped me with overthinking.   10,000 IU vitamin D to control autoimmune, mental health. 500 mg Thiamine - neurologic symptoms 500 mg Nicotinic Acid - increase capillary blood flow 500 mg Pantothenic Acid - creates energy from glucose Krebs Cycle 1000 mcg B12 - creates hemoglobin for oxygen transport 500 mg Taurine - essential amino acid, a powerful antioxident that we make indogenously so it is officially labeled "Conditional Essential" as Choline used to be, but not enough when sickness increases inflammation. reduces Reactivite Oxygen Species (ROS are are free radicals.). 840 mg Phosphatidly Choline x 3 - essential for fat digestion, gall bladder, liver, brain fog, cell membranes, prevent congenital spinal defects (along with B6, B12, folate, Taurine. Iodine - muscle tone, testosterone, hyper and hypo thyroid, slow healing.  600 mcg of Liquid Iodine.  Sometimes twice a day, usually added to a drink.
    • Scott Adams
      Finding gluten free ingredients

      By Scott Adams · Posted

      I completely understand the frustration of finding reliable gluten-free ingredients—it's exhausting when trusted products disappear or companies don't respond to safety inquiries. For teff flour in bulk, check out Azure Standard or Bulk Foods; both often carry gluten-free grains in larger quantities and clearly label dedicated facilities. For soy flour, Anthony's Goods tests for gluten and offers bulk options, though always verify their current certifications. For beans, peas, and lentils, Palouse Brand is a great choice—they're GFCO-certified and transparent about their farming practices. As for lentil elbow macaroni, Explore Cuisine offers similar pastas, though cross-contact policies vary. When companies don't respond, I lean on third-party certifications (GFCO, NSF) or stick with brands like Jovial or Edward & Sons that prioritize allergen safety. It's a constant hunt, but hopefully these leads help! Have you tried local co-ops or ethnic markets for teff? Sometimes they stock bulk African or Indian brands with clear labeling.
    • Scott Adams
      beans in dessert recipes

      By Scott Adams · Posted

      Beans in desserts are a fantastic way to add moisture, structure, and protein while keeping recipes gluten-free. Black bean brownies are a classic, but other beans like adzuki and pinto can also work well—adzuki beans are naturally sweet and often used in Asian desserts, making them great for cookies or cakes. Lentils, especially red lentils, blend smoothly into batters and can replace flour in recipes like blondies or muffins. Since you’re allergic to chickpeas, you might try navy beans or cannellini beans for a milder flavor in vanilla-based desserts. For less crumbliness, blending cooked beans into a paste helps bind the dough, and adding a bit of xanthan gum (if tolerated) can improve texture. If you’re experimenting, start with recipes that replace half the flour with bean purée before going fully flourless. Have you tried using aquafaba (bean liquid) as an egg substitute? It works wonders in gluten-free baking too!
    • lmemsm
      Ocd making gluten fears unmanageable. Need advice

      By lmemsm · Posted

      This may make you feel better about cross-contamination: https://nationalceliac.org/celiac-disease-questions/do-i-need-new-designated-pans-plates-and-utensils/ https://theceliacscene.com/rethinking-cross-contamination-no-need-to-be-so-careful/ I use Tom's of Maine or a toothpaste that states it's gluten free.  I have allergic reactions to some toothpastes so some of the toothpastes in health food stores are usually safer for me. They're typically gluten free as well. Spices can contain cross-contamination from gluten.  There are a few lists online of spices that are safe for celiacs.  I also grow my own herbs and use them in place of store bought when I can.  I think Badia lists their spices as gluten free and Spice Lab has some gluten free too. Knitty Kitty has a great point about nutritional deficiencies and B vitamins.  I got a lot of aches and pains when I got off gluten.  I tried to replace wheat with other healthy grains like teff, buckwheat and sorghum.  Limiting one's diet too much and not getting enough vitamins, can make someone feel worse.  A lot of the gluten free foods in the stores are made with lower quality ingredients than the wheat varieties.  I try to replace all my foods with homemade options.  Then I know the quality of the ingredients and which vitamins I may be high or low in.  Probiotics or prebiotics can help with bathroom issues.  Better to get them in foods if possible and not pill form.  My doctors keep recommending magnesium too.  It's not supposed to be taken alone, but they don't seem to care about that.  It's easy for vitamin D to be low too.  That was another thing doctors told me to take.  Unfortunately, they didn't monitor it and it went too high.  Again, better from natural sources like food and sunlight.  However, supplementing can help if you're not getting enough.  Some sources say to take D with K2.  You may want to have iodine levels checked.  If you add iodine, make sure to get sufficient selenium for thyroid.  You can get iodine naturally in most seaweed.  Nori may also be one of the few non-animal sources for B12.  Brazil nuts are a good source of selenium and you only need a few a day to meet RDA.  Some brands of nuts specifically say gluten free.  Unfortunately, there are issues with Brazil nut production and they're much harder to find this year. The more you can vary your diet the better.  One study said aim for at least 30 different foods in a week.  You might want to try kiwi fruit.  There were some studies that said eating kiwi improved mood.  It also has a covering which most people don't eat, so that should protect what's inside from contamination. I've limited my diet quite a bit over the years because of migraines, so I know how uncomfortable it can be finding safe foods.  However, I'm afraid limiting diets like that may actually be causing more harm than good.  It's something I'm trying to work on.  I keep trying to expand the number of foods I eat and my recipe repertoire.  I made a list of brands of foods that I've found that are gluten free so I have a guide when I'm shopping.  
    • knitty kitty
      Ocd making gluten fears unmanageable. Need advice

      By knitty kitty · Posted

      Hello, @Dora77, I agree with you that your doctors aren't very knowledgeable about Celiac Disease.  My doctors didn't recognize nutritional deficiencies either.  I became very deficient in vitamins before I was diagnosed, so having experienced similar, I understand what a difficult time you're having.   Poor absorption of essential nutrients is caused by the damage done to the intestines by Celiac Disease.  The gluten free diet can be low in essential nutrients, so supplementing to boost your absorption is beneficial.  New symptoms can develop or worsen as one becomes more and more deficient.   There's eight essential B vitamins that our bodies cannot make, so they must come from our food and supplements.  These eight B vitamins work together, like instruments in an orchestra.  They need to be supplemented together with essential minerals like magnesium.   Deficiencies in the B vitamins can have overlapping symptoms.  Some symptoms can be traced to specific B vitamins.  OCD can be traced to low Pyridoxine Vitamin B 6.  Yes, I had OCD and washed my hands until my skin cracked and bled.  ADHD symptoms can be traced to low Thiamine Vitamin B 1.  ADHD is something one is born with.  People who are born with ADHD have a metabolic problem with getting sufficient thiamine into their brain cells.  People who develop symptoms of ADHD later in life are more likely to be low in Thiamine.  The same symptoms appear if one is not getting sufficient thiamine from the diet.  Yes, I developed symptoms of ADHD.  These symptoms improved and disappeared after supplementing with Thiamine and the other essential nutrients. I was diagnosed with Type Two Diabetes.  99% of diabetics of both types are deficient in Thiamine because our kidneys don't re-absorb thiamine properly.  Thiamine is needed to make insulin and digestive enzymes in the pancreas.  Poor digestion (floating, undigested stools) can result with insufficient pancreatic enzymes.  The gall bladder (upper right quadrant) needs thiamine to make and release bile which also helps with digestion.  Constipation is also a symptom of Thiamine and magnesium deficiencies.  The thyroid is another organ that uses lots of Thiamine, too.  Low thyroid hormones can be due to insufficient thiamine, selenium, iron, and iodine.  Swelling of hands, face and feet are also symptoms of thiamine insufficiency.   Our bodies use thiamine to make energy so organs and tissues can function.  Thiamine cannot be stored longer than three weeks.  If our stores are not replenished every day, we can run out of Thiamine quickly.  If we do get some thiamine from our diet, symptoms can wax and wane mysteriously, because a twenty percent increase in dietary thiamine causes an eighty percent improvement in brain function and symptoms.  Thiamine interacts with all the other vitamins in some way.  Many other vitamins and their metabolic processes won't work without thiamine.  In Celiac Disease you are apt to be low in all the essential nutrients, not just thiamine, but thiamine deficiency symptoms may appear first. Talk to your dietician about eating a nutritionally dense gluten free diet.  Keep in mind that processed gluten free foods do not contain sufficient vitamins to be useful.  Processed gluten free foods are filled with saturated fats and excess fiber (that could explain your constipation).  Dairy products, milk and cheese can cause problems because Casein, the protein in dairy, causes the same autoimmune reaction that gluten does in some.  Your current restricted diet is dangerous to your health.  I followed the Autoimmune Protocol Diet (Dr. Sarah Ballantyne).  It's a Paleo diet that promotes intestinal healing.   Discuss with your doctors about correcting nutritional deficiencies as soon as possible.   Interesting reading... https://pubmed.ncbi.nlm.nih.gov/34165060/ https://pubmed.ncbi.nlm.nih.gov/21816221/#:~:text=Lipid-soluble thiamin precursors can,and attention deficit%2Fhyperactivity disorder.
×
×
  • Create New...