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

Doctor Won't Confirm

bellac

Recommended Posts

bellac Newbie
bellac
Posted

Ok, my husband and I are in turmoil about what to do...

Here's a recap of our story. Our daughter's bloodwork and biopsy showed early stages/symptoms of celiac (she didn't have any symptoms - diarhea, etc). She's been on a gluten-free diet for 7 months. I just got back from the GI appt and he said based on these two things we are lead to diagnose celiac, however, he can not confirm it. He said we could put her back on a main-stream diet and see what happens (if symptoms arise she'll go in for another biopsy right awa, if no symptoms arrive then she'll go in for a biopsy in about a year). The idea of putting us all thru that again doesn't sound appealing, however, the idea of having an unconfirmed diagnosis and forcing my daughter to live her life as though she has celiac even though she may not doesn't sound too appealing either. We could do a genetic test and if it came back negative then she does not have it, however, if it comes back positive it's inconclusive....

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

Celiac.com Sponsor (A8-M):


adab8ca Enthusiast
adab8ca
Posted

Ok, my husband and I are in turmoil about what to do...

Here's a recap of our story. Our daughter's bloodwork and biopsy showed early stages/symptoms of celiac (she didn't have any symptoms - diarhea, etc). She's been on a gluten-free diet for 7 months. I just got back from the GI appt and he said based on these two things we are lead to diagnose celiac, however, he can not confirm it. He said we could put her back on a main-stream diet and see what happens (if symptoms arise she'll go in for another biopsy right awa, if no symptoms arrive then she'll go in for a biopsy in about a year). The idea of putting us all thru that again doesn't sound appealing, however, the idea of having an unconfirmed diagnosis and forcing my daughter to live her life as though she has celiac even though she may not doesn't sound too appealing either. We could do a genetic test and if it came back negative then she does not have it, however, if it comes back positive it's inconclusive....

Hello!

I am not sure I understand-if her blood work and biopsy indicated Celiac, she has it. There are many Celiacs called "silent" celiacs that have little to no symptoms and the celiac disease comes out while they are being tested for something else. I had no GI symptoms, none of my Dr's can believe I have Celiac disease but it is what it is...Even if there are little to no symptoms, damage is still being done to the intestines and it may not remain silent forever. If there was damage during the biopsy, then it isn't necessarily early stages.

can you post a few more details about what the blood work and biopsy results stated?

txplowgirl Enthusiast
txplowgirl
Posted

There's no such thing as being a little bit pregnant. Either you are are you aren't. If the blood tests are indicative then that means it is. Simple, period. She is having an auto immune reaction and she has some kind of intestinal damage and may have other possible auto immune disorders that may develop as well as can develop possible cancer later in life as well as short stature. Please keep her gluten free.

tarnalberry Community Regular
tarnalberry
Posted

Yeah - she's got an immune response to it, and she's got intestinal damage from it: that means she has it!

The doc is probably wishy washy because he's in the "oh, the diet is so hard, unless her life is unmanageable with symptoms, she won't stay on the diet, so lets not label her". Bubkis. You, and she, are smarter than that!

bellac Newbie
bellac
Posted
  • Author

Hello!

I am not sure I understand-if her blood work and biopsy indicated Celiac, she has it. There are many Celiacs called "silent" celiacs that have little to no symptoms and the celiac disease comes out while they are being tested for something else. I had no GI symptoms, none of my Dr's can believe I have Celiac disease but it is what it is...Even if there are little to no symptoms, damage is still being done to the intestines and it may not remain silent forever. If there was damage during the biopsy, then it isn't necessarily early stages.

can you post a few more details about what the blood work and biopsy results stated?

I don't have all her numbers, one number was a 12 when 4 is good/normal. After her endoscopy the doctor didn't expect celiac to be an issue because everything looked healthy but biopsy results stated "early stages/symptoms".

I think we are going to ask the dr to re-do her bloodwork. She's been on a gluten-free diet for 7 months and at least if we have the bloodwork re-ran her numbers should be down/normal and that can help me and my husband feel more confident that her diet is doing something.

Please, no one think we are in denial of celiac - we can deal with it. There's just so much grey area, even the doctor says it's a grey diagnosis....

seezee Explorer
seezee
Posted

Is it possible for you to send the biopsy and lab tests to another GI doctor who specializes in celiac. I found that some doctors aren't too knowledgeable. There are a number of celiac disease centers at hospitals around the country. It seems that you could possibly send the lab work there or maybe talk to someone else. I can't quite get the logic of making a child ill and damaging their digestive system for months.

mstroud Rookie
mstroud
Posted

I agree that it sounds like she has positive test results and I don't understand why the doctor would hesitate to diagnose her. My son was 7 when he was diagnosed and his results were on the 'mild' side as well. He had definite symptoms (abdominal pain, dark circles, pain in his legs / joints) and they told us that his biopsy results showed early signs of celiac disease and his blood results were 'low positive.' They diagnosed him, but did say that his results were probably on the low side because we caught it early. He did have the genetic test and it came back positive as well.

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

I am a little confused by this whole thread too. As I understand it, the celiac panel was not run because she was having any symptoms, but for some other reason??? That is why the results were a surprise to everyone? However, both results were positive, but because she was a silent celiac the doctor will not make a diagnosis. The reason the biopsy samples are taken is because the flattened villi often only show up under microscopic examination; i.e, they are not visible to the naked eye during the scope. But the microscopic exam showed early stage celiac, confirming the blood work. I am at a loss as to why anyone is doubting this diagnosis.

scarlett77 Apprentice
scarlett77
Posted

OK, my take on the situation is this: she tested positive for BOTH blood and scope. How can the doctor not diagnose based of those results? If it acts like a horse and looks like a horse it is a horse. My suggestion is to take the results of the positive labs and endoscopy to another GI and see if s/he can give an official diagnosis.

There is NO WAY in HECK that I would subject my child to an entire YEAR of gluten just for a diagnosis. That is ridiculous. I myself may be looking at making a decision to do a gluten challenge with my youngest and I'm still on the fence about it(leaning towards NOT though). I understand that you don't want to have her miss out if she isn't Celiac, but you have had 2 tests that are positive.

lovegrov Collaborator
lovegrov
Posted

Positive on both. She has it. Be glad you caught it before she got REALLY sick. I had to get to the point where I was hospitalized for 11 days and missed 10 weeks of work.

BTW, if your doctor truly said that he wanted her to go back to gluten and if symptoms arise he's do another biopsy RIGHT away, then he's showing his ignorance about celiac. Most experts agree you need to be eating gluten for many weeks, months, actually, before you could have an accurate biopsy.

richard

Archived

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

Go to topic listing

  • 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. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Son's legs shaking

      @lizzie42, You're being a good mom, seeking answers for your son. Cheers! Subclinical thiamine deficiency commonly occurs with anemia. An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal. Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps...
    2. Scott Adams
      - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this...
    3. knitty kitty
      - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease. Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease. Though having the genes for Celiac...
    4. trents
      - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining...
    5. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,868
    • Most Online (within 30 mins)
      7,748
    LMGarrison
    Newest Member
    LMGarrison
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Bob red mill gluten free oats

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      High TTG-IgG and Normal TTG-IgA

      By knitty kitty · Posted

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
×
×
  • 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.