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

My Doctor Diagnosed Me Without A Biopsy?


BeccaM

Recommended Posts

BeccaM Rookie

Hello All-

I have posted before explaining my situation. I am a cancer survivor who for ten years has been dealing with pain, nausea, osteoporosis, neuropathy, diarrhea etc.... The doctors had blammed it all on the treatments (chemo, radiation) and now I finally have a GI doctor who just diagnosed me with Celiac.

He said that I am "Clinically Celiac". He doesn't feel like he needs to do a biopsy. My blood work was so borderline low before, and after a while on the gluten-free diet, it was fantastic. I mean, my white count which always hovers around 2.2 (normal is 5-10) was up to 3.5. Pretty cool!! He found that my actual celiac tests were not positive, but he said that it was because I had been gluten free for a while. He wants me to just try a gluten diet for a week or two to "firm up" the diagnosis. He said that if I feel awful on gluten, then we will know for sure.

Anyone else diagnosed with out the biopsy?

Thanks in advance.

-Becca


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



Celiac.com Sponsor (A8-M):



nettiebeads Apprentice
Anyone else diagnosed with out the biopsy?

Thanks in advance.

-Becca

Ooh, my kind of dr. If your body feels better withouth gluten, then you have ipso facto celiac. My dr. dx'd me w/o bloodwork or biopsy. It's called the diet challenge and is a very viable diagnostic tool. I'm glad you have a dr. that is taking into consideration everything you've been through and is paying attention to what your body is telling you. Try the diet challenge under your dr's direction. If you feel better, then continue. If not, then he may have to find other avenues to explore, but it sounds like he's on the right track.

penguin Community Regular
Anyone else diagnosed with out the biopsy?

Thanks in advance.

-Becca

Only my IgG was high on my blood test, so my dr put me on a gluten-free diet to see if it works. If it works, I have it, if it doesn't I don't. I've said this before, but she's taking the :huh:duh :huh: approach. She's also kind of apprehensive, though, she's waiting until she sees my records from my GI doc in AR, since he did an endoscopy...She also doesn't want to do an endo if possible, since it's so invasive :P

Guest nini

I was dx'ed without a biopsy. My blood test levels were so high that he said that there was no doubt about it... Also since my health improved dramatically on the gluten free diet he said that I most definitely had celiac and the only reason to do the biopsy was if I was not improving on the diet.

CMCM Rising Star

There seem to be a number of doctors/researchers who are pushing for the elimination of the biopsy as the main diagnostic tool. Blood tests can be unreliable. Enterolab's stool tests claim to have a much greater diagnostic capability, but that has not be accepted yet by the broader medical community (unfortunately!!). There may be occasional reasons for the biopsy, but once a suspicion of celiac is there, the gluten free diet seems a better indicator of diagnosis. The diet is the only treatment anyway, and how hard is it to do the diet for awhile and see how it goes?

VydorScope Proficient

Heck I was diagnosed with TWO non-postive bisopy's. Be happy and gald that you got a doc that understands celiac disease well enough to skip the UNRELIABLE biospy. :)

mouse Enthusiast

I was diagnosed without a biopsy. I had not ingested ANYTHING (including water, which I threw up) in the nine days prior to the blood test. Totally dehydrated and massive weight loss. The month prior to the test I had very little sustenance. When the light bulb went off in my GP's head for celiac disease, I probably had very little gluten in my body. The test came back slightly elevated and he still diagnosed celiac disease. He said I was far to sick to go through the biopsy and I certainly did not push it. The blisters on my hands disappeared and I could not believe the dramatic change the diet made in my health.


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor
Hello All-

I have posted before explaining my situation. I am a cancer survivor who for ten years has been dealing with pain, nausea, osteoporosis, neuropathy, diarrhea etc.... The doctors had blammed it all on the treatments (chemo, radiation) and now I finally have a GI doctor who just diagnosed me with Celiac.

He said that I am "Clinically Celiac". He doesn't feel like he needs to do a biopsy. My blood work was so borderline low before, and after a while on the gluten-free diet, it was fantastic. I mean, my white count which always hovers around 2.2 (normal is 5-10) was up to 3.5. Pretty cool!! He found that my actual celiac tests were not positive, but he said that it was because I had been gluten free for a while. He wants me to just try a gluten diet for a week or two to "firm up" the diagnosis. He said that if I feel awful on gluten, then we will know for sure.

Anyone else diagnosed with out the biopsy?

Thanks in advance.

-Becca

Both I and my DS were diagnosed through dietary changes. The gluten challange made me too sick to go to the biopsy. My DD had a biopsy that showed changes but not full blown celiac.

happygirl Collaborator

I was diagnosed without a biopsy.....had positive blood work. My dumb dr told me to go on the gluten-free diet before my biopsy....so amazingly enough, I had healed and they didn't see any blunted villi. But, I still have the Celiac diagnosis.

let-the -sun-in Newbie
Hello All-

I have posted before explaining my situation. I am a cancer survivor who for ten years has been dealing with pain, nausea, osteoporosis, neuropathy, diarrhea etc.... The doctors had blammed it all on the treatments (chemo, radiation) and now I finally have a GI doctor who just diagnosed me with Celiac.

He said that I am "Clinically Celiac". He doesn't feel like he needs to do a biopsy. My blood work was so borderline low before, and after a while on the gluten-free diet, it was fantastic. I mean, my white count which always hovers around 2.2 (normal is 5-10) was up to 3.5. Pretty cool!! He found that my actual celiac tests were not positive, but he said that it was because I had been gluten free for a while. He wants me to just try a gluten diet for a week or two to "firm up" the diagnosis. He said that if I feel awful on gluten, then we will know for sure.

Anyone else diagnosed with out the biopsy?

Thanks in advance.

-Becca

HI Becca

i too have neuropathy which was caused by malnutrion and the shortage of b12, since i went gluten free i find its not as agressive but i still have it. how do you deal with it yourself?. also my white blood count went down i was in er 2 weeks ago and they gave me a copy of the lab work and said my wbc is only1.7. i went to my regular gp who said he would not worry about it too much, but somewhere in the back of my mind i think that ,that it shouldnt be so low and its for a reason. anyway hope this diet works for you it as done wonders for me .

BeccaM Rookie

thanks so much everyone for your positive thoughts!

I have been struggling lately- I was hospitalized with what was thought to be a bowel obstruction, (would have been my third in six months) and had an allergic reaction to compazine. That was a week and a half ago, and since then, I have been feeling awful.

Just really hypoglycemic- sooo shakey and yucky. Like i'm going to faint and my heart palpitates. Does this happen to anyone else?

The doctor is having me check my blood glucose (I have a glucometer) and I have been getting the wierdest readings.. fasting -when I awake my sugar is 80, then, after I eat breakfast my sugar is 79, right before lunch it is 80, and right after eating 75. All of these are low- normal is 90-120/ So I'm wondering if there is something up with my pancreas, or if any of you are chronically hypoglycemic too.

thanks

becca

Guest Robbin

Becca, A lot of us are hypoglycemic, it sounds like you might be. Also, I have had problems with my potassium levels--too low--causes similar symptoms. I try to eat potassium-rich foods like bananas, potatoes, orange juice, etc. Take care, and keep us posted on your recovery. God bless :):)

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. - Clear2me replied to Clear2me's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Gluten free nuts

    2. - Mmoc replied to Mmoc's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Blood tests low iGA 4 years later digestive issues

    3. - Aretaeus Cappadocia replied to Clear2me's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Gluten free nuts

    4. - trents replied to Larzipan's topic in Related Issues & Disorders
      42

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    5. - Scott Adams replied to Larzipan's topic in Related Issues & Disorders
      42

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,388
    • Most Online (within 30 mins)
      7,748

    Whirlwind acres
    Newest Member
    Whirlwind acres
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Clear2me
      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
    • Mmoc
      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
    • Aretaeus Cappadocia
      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to see if they can get you the gluten-free version (they are tasty) > This past week I bought "Sliced Raw Almonds, Baking Nuts, 5 lbs Item 1495072 Best if used by Jun-10-26 W-261-6-L1A 12:47" at Costco. The package has the standard warning that it was made on machinery that <may> have processed wheat. Based on that alone, I would not eat these. However, I contacted customer service and asked them "are Costco's Sliced Almonds gluten free?" Within a day I got this response:  "This is [xyz] with the Costco Member Service Resolutions Team. I am happy to let you know we got a reply back from our Kirkland Signature team. Here is their response:  This item does not have a risk of cross contamination with gluten, barley or rye." Based on this, I will eat them. Based on experience, I believe they will be fine. Sometimes, for other products, the answer has been "they really do have cross-contamination risk" (eg, Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs Item 1195303). When they give me that answer I return them for cash. You might reasonably ask, "Why would Costco use that label if they actually are safe?" I can't speak for Costco but I've worked in Corporate America and I've seen this kind of thing first hand and up close. (1) This kind of regulatory label represents risk/cost to the company. What if they are mistaken? In one direction, the cost is loss of maybe 1% of sales (if celiacs don't buy when they would have). In the other direction, the risk is reputational damage and open-ended litigation (bad reviews and celiacs suing them). Expect them to play it safe. (2) There is a team tasked with getting each product out to market quickly and cheaply, and there is also a committee tasked with reviewing the packaging before it is released. If the team chooses the simplest, safest, pre-approved label, this becomes a quick check box. On the other hand, if they choose something else, it has to be carefully scrutinized through a long process. It's more efficient for the team to say there <could> be risk. (3) There is probably some plug and play in production. Some lots of the very same product could be made in a safe facility while others are made in an unsafe facility. Uniform packaging (saying there is risk) for all packages regardless of gluten risk is easier, cheaper, and safer (for Costco). Everything I wrote here is about my Costco experience, but the principles will be true at other vendors, particularly if they have extensive quality control infrastructure. The first hurdle of gluten-free diet is to remove/replace all the labeled gluten ingredients. The second, more difficult hurdle is to remove/replace all the hidden gluten. Each of us have to assess gray zones and make judgement calls knowing there is a penalty for being wrong. One penalty would be getting glutened but the other penalty could be eating an unnecessarily boring or malnourishing diet.
    • trents
      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies also indicate the amount of gliadin in human breast milk is miniscule and unlikely to cause reactions:  https://www.glutenfreewatchdog.org/news/gluten-peptides-in-human-breast-milk-implications-for-cows-milk/ I would also point out that Dr. Peter Osborne's doctorate is in chiropractic medicine, though he also has studied and, I believe, holds some sort of certifications in nutritional science. To put it plainly, he is considered by many qualified medical and nutritional professionals to be on the fringe of quackery. But he has a dedicated and rabid following, nonetheless.
    • Scott Adams
      I'd be very cautious about accepting these claims without robust evidence. The hypothesis requires a chain of biologically unlikely events: Gluten/gliadin survives the cow's rumen and entire digestive system intact. It is then absorbed whole into the cow's bloodstream. It bypasses the cow's immune system and liver. It is then secreted, still intact and immunogenic, into the milk. The cow's digestive system is designed to break down proteins, not transfer them whole into milk. This is not a recognized pathway in veterinary science. The provided backup shifts from cow's milk to human breastmilk, which is a classic bait-and-switch. While the transfer of food proteins in human breastmilk is a valid area of study, it doesn't validate the initial claim about commercial dairy. The use of a Dr. Osborne video is a major red flag. His entire platform is based on the idea that all grains are toxic, a view that far exceeds the established science on Celiac Disease and non-celiac gluten sensitivity. Extraordinary claims require extraordinary evidence, and a YouTube video from a known ideological source is not that evidence."  
×
×
  • 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.