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

Questions About Biopsy

gabyy

Recommended Posts

gabyy Rookie
gabyy
Posted

Hi, I am not new to this forum, but last posted about a year ago. I have some gi symptoms -mainly gas and bloating which occur after eating gluten, but also occur after eating fruits and vegetales. I also get occasional heartburn. The symptoms were more annoying than anything else, and I never really thought to see a doctor about it. My doctor had me get the "celiac blood panel" bcause my ferritin levels are constantly low, even while on iron supplements. I think the highest my ferritin level has been is 26, the lowest is 2. I originally posted right before getting the bloodwork done last September. The bloodwrok came back negative, and I did not really think much more about Celiac disease.

I get CBC and ferritin levels done every few months, and I saw my doctor about my most recent results yesterday. My ferritin level is down to 5. He has reffered me to a gi doctor and wants a biopsy done to be absolutely sure I don't have Celiac disease. I have no objections, but I was wondering if anyone has had negative bloodwork but a positive biopsy? If so, how often does this happen? I have autoimmune thyroid disease, eczema, psoriasis, and am half Irish, half Italian. I understand that all of these factors mean I am at slightly higher risk for Celiac. Here is my Celiac Panel results from last September if that helps:

Endomysial Abs, S (IgA) My Result: Negative Expected Result: Negative

Gliadin Ab IgA My Result: 5.8 Expected Result: < 25

Gliadin IgG My Result: 5.1 Expected Result: < 25

I understand that an IgA deficiency may lead to inaccurate blood results - I am not sure if any of those blood tests measured the amount of IgA I have. Also, I guess I am lucky in terms of doctors, mine is really pushing for the biopsy, and even suggested that if it is negative, to try gluten free and if my iron levels increase, he would consider that proof that I have Celiac. I am not sure that I will go that route though if it is negative - I love all the gluten rich foods! Anyway, any help is appreciated. THanks, Gabyy

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

You have got a very good doctor there and I sure do hope you listen to him. Your doctor, in your circumstances, is very justified in saying he thinks you should go gluten free regardless of the outcome of the biopsy. I am surprised to hear he recognizes that celiac can be the problem despite a miss on the biopsy. Damage can be spotty and with 22 ft of sm intestine it can be easy to miss. The gluten free diet can be a bit to get used to but it can save your life and your sanity. In some of us the damage to other organs before severe GI problems develop can be severe and permanent. Many of us don't realize how many systems are impacted and how severely our brains are being attacked until after we have been gluten-free for a bit. I hope you listen to your doctor and that you are aware that your dependance on gluten foods is also a sign of intolerance, we often form an actual addiction to things that poison us.

par18 Apprentice
par18
Posted

Hi,

Like other posters your situation is not as straightfoward as you would like. You have had a negative blood test and a doctor wanting to do a biopsy. Even if it (biopsy) is negative the doctor is leaning toward you trying a gluten-free diet. What would happen if you did this (try diet) and get a positive response? Would the doctor be willing to give you a positive diagnosis only on a diet response? Blood/biopsy testing in itself is not an exact science as there has been just about every combination (positive/positive, positive/negative, negative/positive, negative/negative). The only real constant is diet response. You either respond or don't respond. Say everything is negative (blood/biospy) yet you try the diet and it works. Are you going to stay with it or start searching for other possible causes to your problems? Would it take only a "postive" result (blood or biopsy or both) to get you to even try the diet? Only you can answer these questions. Good luck.

Tom

dadoffiveboys Rookie
dadoffiveboys
Posted

I had similar symptoms to yours - and the only test with anything I got was an IgA level was 48. <25 was normal and >50 was abnormal.. 25-50 was equivocal (This lab was from the Mayo Clinic lab.) I had like 20 biopsy's done - intestines, stomach and esophagus and came back with GERD and gastritis.. no signs of 'celiac'. If you see any of my other postings.. you will find that myself.. ALL FOUR of my boys and my father are allergic to gluten (or gluten intolerant.. not sure if there is a difference). My dad - misdiagnosed with heartburn for 30 YEARS.. H. Pylori infection, stomach valve damage, kidney failure, neuropathy, high blood pressure.... probably caused by this. The H. Pylori was cleared a while ago via antibiotics, the stomach valve damage is permanent, the kidney damage (40% kidney function now) is permanent - we are hoping for recovery though. The other things, reflux, high blood pressure, neuropathy and fatigue are COMPLETELY GONE following months of a gluten-free diet... and he's off ALL HIS MEDICATIONS! (YAY). Myself and my sons are off all reflux medicine, asthma medicines - free of all rashes and ezcema. So you can see that there is nothing better than the gluten-free diet.

Incidentally we had an accidental gluten exposure from the tostitos being contaminated (go flour tortillas from frito lay contaminating the corn torillas :( ) and myself and two of my sons that ate it got rashes all over :( but we don't have DH or celiac so go figure.. but I see that as a clear sign of our intolerance to gluten.

BTW.. my good doctors did label me as having a "Gluten Allergy" but NOT "celiac disease" from the dietary response - it was so OVERWHELMINGLY positive I don't think they can ignore it :) You all can tell me what the heck the difference is - if any.

Archived

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

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


  • Member Statistics

    • Total Members
      130,037
    • Most Online (within 30 mins)
      7,748
    Celiac mimi
    Newest Member
    Celiac mimi
    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

    • rjane
      Gluten Sensitivity

      By rjane · Posted

      my husband who is 67 has just been diagnosed with CELIAC'S and I am finding it very difficult to make meals for him, I have a new bread maker and finding it hard to make something edible from it, I am 81 and find now I have to eat the same as him ,as making meals is hard work and making 2 different meals even harder, he has been on the gluten free food for over a month and today he had a bad bout of the runs I am wondering if its my fault, I thought I was being so careful , I am finding it like a minefield trying to sort out what to give him when he has a bad day , any idea's would be welcome thank you  
    • knitty kitty
      Toddler recently diagnosed with Type 1 diabetes and need help understanding coeliac screening test results

      By knitty kitty · Posted

      Welcome to the forum, @mytype1diabetes, Your statement that your daughter has become itchy and has hair loss made me think of iron deficiency.  Those were the same symptoms i had when I was iron deficient.  Was she tested for iron deficiency anemia at the time of her diabetes diagnosis?   Seems in the early stages of iron deficiency anemia, blood glucose levels can be falsely elevated.  Treating Vitamin D deficiency can also help immensely.  Vitamin D deficiency, iron deficiency, and deficiencies in the eight B vitamins, especially thiamine, can occur in Celiac disease.  Changes in stool can be caused by iron or thiamine deficiency. I was diagnosed with type two diabetes and had the same deficiencies.  I would not feel comfortable waiting three to six months for a recheck.  I would get the iron deficiency checked right away.   Hope this helps!  Sending prayers! References: The Effect of Iron Deficiency Anemia on Hemoglobin Glycation in Diabetics and Non-diabetics https://pmc.ncbi.nlm.nih.gov/articles/PMC11513211/#:~:text=noted increased HbA1c in IDA individuals%2C which,IDA before adjusting diabetes treatment [ 11]. Effects of iron deficiency anemia on hemoglobin A1c in type 1 diabetes mellitus https://pubmed.ncbi.nlm.nih.gov/10453183/ Impact of vitamin D deficiency on iron status in children with type I diabetes https://www.nature.com/articles/s41598-024-61559-5#:~:text=Iron-deficiency anemia is the,both clinical conditions that coexist. Thiamine Level in Type I and Type II Diabetes Mellitus Patients: A Comparative Study Focusing on Hematological and Biochemical Evaluations https://pmc.ncbi.nlm.nih.gov/articles/PMC7282352/
    • Wends
      Toddler recently diagnosed with Type 1 diabetes and need help understanding coeliac screening test results

      By Wends · Posted

       So sorry and sending well wishes. Replying from the UK. The NHS Coeliac Screen test is igAttg (including total igA). Your toddler is unlikely igA deficient with a titer of 22, as a positive test. When the igA anti-tissue transglutaminase antibodies are raised above the reference value or positive, the endomysial test is performed. The TTG test is suggestive of coeliac disease BUT it can be transiently raised in type 1 diabetes, milk protein intolerance (common in early childhood. Can also cause malabsorption similar to coeliac disease). Can be slightly raised in other food sensitivity and food allergy and some other conditions. Whilst it is more specific for coeliac disease than the older anti-gliadin test the EMA test gives a high specificity for coeliac, but labour intensive test so is checked when the TTG shows positive as a further confirmation of a likelihood of Coeliac. Sometimes in children the anti-DGP (deaminated gliadin peptide) igA and IgG are performed as more likely positive in childhood coeliac disease. Unfortunately less used test these days in favour of ttg test. Though in research studies still utilised in addition to ttg and EMA. It usually follows that the EMA test will be positive in active coeliac disease later than the TTG shows positive. It may be classic transient antibodies with type 1. Likely what the Dr is counting on to not worry you or put your child through unnecessary testing. it also takes time as in weeks/months for antibodies to build up. The new guidelines by Gastroenterology Society say in children coeliac can be diagnosed without biopsy if the ttg is ten times the upper value. Plus positive EMA. EMA is usually positive after ttg. It’s a good sign it’s negative and the Doctor is doing the right thing to retest in three to six months. It’s the only way for a definite diagnosis and whether further testing is needed (endoscopy and biopsy). The Doctor is taking the wait and see approach as it is common in type 1s for the TTG antibodies to normalise too, and will be following standard practice. Return to your Dr sooner though, if there are signs of malabsorption and sudden deterioration. It wouldn’t be unreasonable to request another blood test sooner with symptoms of coeliac. It’s a tough one. Have you a family history? Re type 1, Dr Bernstein book invaluable, and type 1 grit online. If you’ve not heard of this elderly type 1 Dr (diagnosed as a child) and his story already you need to. Sadly he recently passed in his 90s still practicing and treating type 1s and 2s. Wealth of info on his diabetes university you tube channel. Was the first to start testing blood glucose numbers at home, he was an engineer and retrained as a Dr. He gave the information to the world and diabetics that its possible to have normal blood glucose numbers and prevent the complications. The law of small numbers. Hope this reply is helpful.  
    • trents
      Toddler recently diagnosed with Type 1 diabetes and need help understanding coeliac screening test results

      By trents · Posted

      Here is an article that gives an overview of all tests that can be used to detect celiac disease:    As you can see, the different tests vary in their degree of specificity and sensitivity. So, it is to be expected that if someone has celiac disease, not all the tests will be positive. Also notice that the tests break down into two large groups, IGA-based tests and IGG-based tests. There is also the EMA (Endomysial Antibodies) which is an older test and has largely been supplanted by he tTG-IGA which is less expensive to administer. So, when you report that the TTG score from your daughter's bloodwork is 22ku/l, we assume you are referring to the tTG-IGA test, which is the most popular test ordered by physicians when checking for celiac disease and considered to be the centerpiece test. However, you do not mention if there was a "total IGA" test run. Whenever the tTG-IGA is ordered, a total IGA should also be ordered to check for IGA deficiency. IGA deficiency will result in other IGA test scores, such as the tTG-IGA being artificially low, even falsely negative. This is especially true for young children. This is discussed in the article I linked. If your physician did not order total IGA test, this should have been done. Do you have a recourse for requesting such? I should also mention that you must not withdraw gluten from your toddler's diet until all testing for celiac disease is completed. Doing so would invalidate the testing.
    • Scott Adams
      Toddler recently diagnosed with Type 1 diabetes and need help understanding coeliac screening test results

      By Scott Adams · Posted

      I’m so sorry to hear about your toddler’s recent Type 1 diabetes diagnosis, and I understand how overwhelming it must feel to now be navigating possible celiac disease as well. The slightly elevated TTG antibodies (22 ku/L) with normal endomysial antibodies could indicate a few things—sometimes, mild elevations can occur due to factors other than celiac disease, such as recent infections or even Type 1 diabetes itself. However, the symptoms you’ve noticed (changes in stools, itching, and hair thinning) could potentially align with celiac disease, so it’s understandable why you’re concerned. Since the consultant wants to retest in 3–6 months, it may be because they’re assessing whether the antibody levels persist or increase, which would strengthen the case for further investigation (like a biopsy). In the meantime, if your daughter’s symptoms worsen or you feel uneasy waiting, it’s completely reasonable to ask for an earlier review or a referral to a pediatric gastroenterologist for further advice. Keeping a symptom diary until the next test might also help track any patterns. You’re doing a great job advocating for your little one—trust your instincts and don’t hesitate to push for more clarity if needed. Sending you lots of support.
×
×
  • Create New...