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

Negative Biopsy, Against All Reason

Avalon451

Recommended Posts

Avalon451 Apprentice
Avalon451
Posted

So my biopsy results came back today. My GI was sure I had it, because of my extensive symptoms: D for 7+ years, digestive issues ever since I can recall, achy bones, optical migraines, peripheral neuropathy, depression... and my daughter tested positive on blood, skin biopsy for DH, and endo biopsy. My other two daughters both have bloods indicative of celiac, though we're not getting them scoped.

When he did the biopsy, he took 20 samples, put them on two slides, and sent it off. The photos of my duodenum show extensive cobblestone appearance "suspicious for celiac" as his notes put it. The lab came back with a negative result, however! He said "I was very surprised, as I'm sure you are, that it came back negative. However with your normal biopsy and negative tissue transglutaminase antibody, it can be taken as very good evidence that celiac is NOT present. You may still be gluten intolerant or it may be that the long history of D and dyspepsia is all due to IBS."

My question: if my daughters have it, and I had one borderline bloodwork indication, and my husband tested negative... it's got to be from me that they got it, right? So am I "latent" or what?

Don't get me wrong, we're still all going gluten-free. It's just frustrating to wonder: do I really have it, will it trigger someday, what exactly is the deal?

One thing I noticed; on my daughter's endo, the lab (at Children's Hospital in Seattle; presumably a better lab than our local clinic) they tested for intra epithelial lymphocytes (if they're increased to >30/100 then that's a clear indication of celiac). I didn't see that they tested that for mine. Wonder if that's significant.

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

The one thing you have to keep in mind is that your daughters may well have got it from you, that you all carry the same predisposing gene(s), but that yours hasn't fully triggered yet. (And may not ever as far as the testing is concerned :( ) So many people do have all the symptoms but still test negative. And it may be latent celiac or it may be NCGI. And as your realize, that does not mean you can merrily eat gluten.

AS far as the IEL's are concerned, they generally, I believe, only mention them if they are present, not if they are absent (i.e. positive vs. negative).

rosetapper23 Explorer
rosetapper23
Posted

The hands-down expert on celiac, Dr. Alessio Fasano, has written that he no longer believes that a biopsy is the "gold standard" anymore for diagnosing celiac disease. Apparently, there are many factors that can cause a person who truly has celiac to have a negative biopsy: for one thing, the damage to the villi can lie beyond the reach of the scope; for another, the skill of the pathologist may be questionable. In a recent study, the pathology reports were more accurate if they were issued from a teaching hospital than from a standard one.

Also, I have to tell you that I study the faces of celiacs at annual conferences to see if our bone structures are similar. There is a study from Italy that has shown that celiacs' facial bones are different that those of "normal" people, perhaps because our bones continue to grow into our 20s (we have trouble absorbing the hormone that stops our growth). What I've observed is that there appear to be very definite differences in the faces of celiacs, and when you've posted in the past, I couldn't tell if YOU were the celiac...or your husband. You both have what I refer to as "crescent" faces, which belong to people with celiac (based solely on my own observations). From what I've observed, many of us have facial bones that are prominent and somewhat curved--our cheekbones, jaws, and chins. When we turn our faces 3/4 and smile, we look like the caricature of a smiling crescent moon. Since other studies support that we tend to be attracted to people who mirror our own faces, it's not unusual that we should choose other celiacs as our mates. This would explain why so many couples discover later in life that they have, in fact, married another celiac. I only bring this up because I think that it's possible that you BOTH have celiac--the testing is not very reliable...and I think it's possible that your husband also has celiac. This is why so many of your children are so afflicted. Just my opinion...

researchmomma Contributor
researchmomma
Posted

Avalon, Dr. Fasano has noted that biopsies are not entirely reliable. He is hoping to start a diagnosis procedure where to diagnose Celiac you have to have 4 out of 5 criteria: symptoms, genes, positive blood work, villous atrophy and positive result from the diet. You most likely will meet 4 of the 5 criteria. Maybe that will help your doctor. I would get gene tested. Ask him to do it through prometheus and hopefully insurance will cover it.

The other thing to remember is that you may not have developed full Celiac. You may be on your way. To wait until you are fully damaged to get a diagnosis is sort of crazy. I think if you may want to get that gene test (with three kids Celiac there is a good chance that both you and your husband are carriers of the gene). My neighbor is in that boat. All three of her kids carry the gene and one is Celiac and almost died at 18 months from malnutrition.

Here is the link to the article. It is a good one! Open Original Shared Link

Skylark Collaborator
Skylark
Posted

That's good news that you don't have a lot of autoimmunity. :) Be happy! All your problems will still likely go away off gluten, it just may be that you have strong gluten intolerance. Maybe you're latent celiac, maybe not. I don't think there is a clear answer for your questins becasue the tests are too limited. Being gluten-free will ensure that if you are latent celiac, you never seroconvert to a strong positive and have villous atrophy. You may not also have the high risk of autoimmunity that a lot of us do.

I bet you feel much better after a few months on the diet.

Rosetapper, that's fascinating about celiac faces.

Cara in Boston Enthusiast
Cara in Boston
Posted

When my son tested positive (blood) for celiac and I started learning about it, I quickly realized that I had all the symptoms of it and the things I had been to the MD for in the past 6 years could all be explained by celiac disease (dizzy spells, heart palps, GI issues, headaches, numb fingers and toes, etc. etc.) It was a relief to finally figure it out. My blood test came back positive. Then, strangely, my biopsy was perfectly normal and my GI said, "maybe your original blood test was wrong . . . maybe IBS, etc. etc."

By this time my son (6) had been diagnosed by biopsy so I knew he had it (no symptoms - weird) so we both went gluten-free. All my symptoms went away and I feel better than I have in years. When I recounted this story to my son's GI (a celiac disease specialist and researcher) she said that I totally have it (obviously!) and the biopsy could be correct (no damage) due to the fact that I just haven't had it long enough to cause damage. Or incorrect - human error - not enough samples taken, not read correctly, etc etc. My "official" diagnosis is "gluten intolerant" but she is convinced I have celiac disease too.

It makes no difference. If you go gluten-free and feel better, who cares what the doctor found.

Also, I am absolutely certain my mother-in-law has it, so I suspect it is on both sides of the family. Husband tested negative and has no symptoms, but it wouldn't surprise me if my kids got the gene from either one of us.

Cara

Archived

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

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


  • Member Statistics

    • Total Members
      131,191
    • Most Online (within 30 mins)
      7,748
    teresa1955
    Newest Member
    teresa1955
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Ginger38
      Food Allergies

      By Ginger38 · Posted

      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Bread choice for a newbie

      By Kris2093u4 · Posted

      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      7yo struggling!

      By JForman · Posted

      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      My mo,ther married a bread making when I was 4

      By Jane878 · Posted

      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Blood results

      By trents · Posted

      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...