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

If You Have Negative Blood Tests, But Respond To Being gluten-free...

MitziG

Recommended Posts

MitziG Enthusiast
MitziG
Posted

My kids and I were all dx with Celiac after biopsies in April. None of us presented with "classic" symptoms at the time, though I had a childhood that fit the bill plainly. I was reading the biopsy reports today and something caught my attention:

MY report (the GI dx me before the biopsy was rcv'd, based solely on the appearance of my guts. He said it was obvious I had this for a long time, and that damage was severe. But note what the report says>>>

"Prominent villous defect, elongated crypts, surface epithelium contains MODERATE numbers of lymphocytes,, lamina propria contains numerous heteramorphous chronic inflammatory cells, mostly plasma cells and eosinophils"

My blood work was BARELY positive...TTG of 6, with >4 being positive

Now...my DAUGHTER'S bloodwork was more certain- ttg of 26, same values

HER endoscopy looked normal, but the biopsy revealed:

"slight increase in inflammatory cells, slightly elongated crypts, severe villous defect with severe increase in number of intrepithelial lymphocytes"

So...I know the theory has been passed around the board here that silent celiacs may have been fighting gluten so long that the immune system can no longer muster a response. Wondering if part of that "suppressed response" would be indicated by less lymphocyte activity? and thus a lower Ttg? I am not well-versed in the science aspect of all this, or the terminology...but it just seemed interesting to me that my serious visual damage showed only moderate lymphocytes, and a weak positive blood test, while my daughter's less severe damage indicated an immune system hard at work and a much higher TTg?

Just a theory that could maybe explain the negative serology of so many people on here who very clearly have a problem with gluten. Maybe their bodies are just too sick to even MAKE antibodies?

What do you think?

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

Celiac.com Sponsor (A8-M):


Kathy59 Rookie
Kathy59
Posted

Most of it is too in depth for me to explain, all I know is my blood work was negative for Celiac; I had an endecsopy (sp) prior to blood work and nothing was found (but not sure even looking for) at time was sent due to B12 deficiency, but they were not looking for Celiac....treated for active mono, EBV, Chronic Fatigue Syndrome, some improvement, but still had chronic Poops...LOL! Gene test for Celiac and there it was full blown. I would just say if gluten-free lifestyle works then do it. I once had a dr tell me...test results are only has good as the test ordered!

beebs Enthusiast
beebs
Posted

That is a very interesting theory - I am no help because I haven't had the biopsy - but I have had completely negative bloods, but my reactions are so severe that they are considered life threatening. I have always wondered how that is possible - how can I test negative when if I eat gluten I get intussusception and am rushed to emergency. It just doesn't make any sense to me.

SarahJimMarcy Apprentice
SarahJimMarcy
Posted

My blood test was negative. I went gluten free with my daughter and within two days felt better. Months later, the doctor, in all his wisdom, thought I should go back on gluten for two months so they could do an endoscopy. I wouldn't do it. They did the genetic test which came back positive. The genetic test is just a blood draw and it was covered by insurance. Could consider going that route.

pricklypear1971 Community Regular
pricklypear1971
Posted

I had stomach issues when I was a kid. Ulcers at 9, stomach aches at 18 (and more ulcers). Weird stomach cramping/D in my mid 20's. Abdominal pain in late 20's (suspected endometriosis).

After my son was born - nada, except I'd get stomach "bugs" easily and mysteriously eat something "bad" once in a while. But, my thyroid tanked. Got thyroid meds.

Thyroid meds worked for the most part for about 5 years. Then I broke out in that dang rash.

I think the escalating symptoms (and lack of stomach issues - or D turning to chronic C) was my body giving up on one method of attack (GI) and turning to something else (skin, neuro).

So, yes, I think Celiac evolves and changes over time.

MitziG Enthusiast
MitziG
Posted
  • Author

My blood test was negative. I went gluten free with my daughter and within two days felt better. Months later, the doctor, in all his wisdom, thought I should go back on gluten for two months so they could do an endoscopy. I wouldn't do it. They did the genetic test which came back positive. The genetic test is just a blood draw and it was covered by insurance. Could consider going that route.

Good for you! I wouldn't do it either! You shouldn't have to have a test verify that something makes you sick! I wish more doctors would just dx based on symptoms when blood tests and/or biopsies don't always show the true picture. Though in my case, I am grateful for the tests, because I had no idea gluten was a problem for any of us. I had some stomach issues from time to time, but like the above poster, always chalked it up to "eating something that didnt agree with me." My reaction was definitely never something that I would have connected to gluten. Now, after having been off gluten almost 10 months, I have a very obvious reaction to it, very quickly, so I guess that means my immune system is recovering anyway!

UKGail Rookie
UKGail
Posted

I know of one celiac specialist who also thinks that long-standing celiac disease may result in sero-negativity.

You might also find the following link about sero-negative celiac disease useful. It is not completely disheartening. There are some doctors who are thinking about this issue.

Open Original Shared Link

Prickly - my journey is pretty similar to yours except I don't get DH, but had other things too. I agree with your feelings about the development of Celiac, that it gets worse, and presents in new ways if ignored for too long.

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

Celiac.com Sponsor (A8-M):


pricklypear1971 Community Regular
pricklypear1971
Posted

I know of one celiac specialist who also thinks that long-standing celiac disease may result in sero-negativity.

You might also find the following link about sero-negative celiac disease useful. It is not completely disheartening. There are some doctors who are thinking about this issue.

Open Original Shared Link

Prickly - my journey is pretty similar to yours except I don't get DH, but had other things too. I agree with your feelings about the development of Celiac, that it gets worse, and presents in new ways if ignored for too long.

Great link.

I've said it before and I'll scream it from the rooftops...the problems are the tests.

I have an easier time accepting this since I have thyroid disease, which is notorious for bad tests.

BrittLoves2Run Apprentice
BrittLoves2Run
Posted

Most of it is too in depth for me to explain, all I know is my blood work was negative for Celiac; I had an endecsopy (sp) prior to blood work and nothing was found (but not sure even looking for) at time was sent due to B12 deficiency, but they were not looking for Celiac....treated for active mono, EBV, Chronic Fatigue Syndrome, some improvement, but still had chronic Poops...LOL! Gene test for Celiac and there it was full blown. I would just say if gluten-free lifestyle works then do it. I once had a dr tell me...test results are only has good as the test ordered!

I'm jumping in late.. but what does the Gene test...for lack of better words "show" or "prove" that are different from the Celiac panel? I'm a newbie and I really don't know!

Metoo Enthusiast
Metoo
Posted

I'm jumping in late.. but what does the Gene test...for lack of better words "show" or "prove" that are different from the Celiac panel? I'm a newbie and I really don't know!

A gene test would show that you carried genetic markers that show that are at an increased risk for having celiac. Unfortunately it does not prove whether you do or don't have celiac.

stanleymonkey Explorer
stanleymonkey
Posted

my daughter was positive genes, negative blood, and WAS doing great diet wise, so was given a tentative diagnosis of celiac and or nerve damage to her bowel.

I have negative blood, vintage been wait g gluten lite as I don't eat gluten around my daughter bandage noticed I feel enter so has my husband

Archived

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

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


  • Member Statistics

    • Total Members
      132,141
    • Most Online (within 30 mins)
      7,748
    smkatin
    Newest Member
    smkatin
    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

    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      My migraines generally have their onset during the early morning hours as well. Presently, I am under siege with them, having headaches all but two days so far this month. I have looked at all the things reported to be common triggers (foods, sleep patterns, weather patterns, stress, etc.). Every time I think I start to see a pattern it proves not to pan out in the long run. I'm not sure it's any one thing but may, instead, be a combination of things that coalesce at certain times. It's very frustrating. The medication (sumatriptan or "Imatrix") is effective and is the only thing that will quell the pain. NSAIDs, Tylenol, even hydrocodone doesn't touch it. But they only give you 9 does of sumatriptan a month. And it doesn't help that medical science doesn't really know what causes migraines. They know some things about it but the root cause is still a mystery.
    • Scott Adams
      Tamale ingredients

      By Scott Adams · Posted

      These are labeled gluten-free: https://www.amazon.com/Corn-Husks-Tamales-Authentic-Flavorful/dp/B01MDSHUTM/
    • Wheatwacked
      GI DX celiac despite neg serology and no biopsy

      By Wheatwacked · Posted

      Just a gluten free diet is not enough.  Now you have to identify and replenish your malnutrition.  Celiac disease is co-morbid with malabsorption syndrome.  Low vitamin D, Low Thiamine caused Gastointeston Beriberi, low choline, low iodine are common the general population, and in newly diagnosed Celiacs in the western culture its is more likely.  It takes time to heal and you need to focus on vitamins and minerals.  Gluten free foods are not fortified like regular processed foods.  
    • Sarah Grace
      Headaches / Migraines and Hypoglycaemia

      By Sarah Grace · Posted

      Dear Kitty Since March I have been following your recommendations regarding vitamins to assist with various issues that I have been experiencing.  To recap, I am aged 68 and was late diagnosed with Celiac about 12 years ago.  I had been experiencing terrible early morning headaches which I had self diagnosed as hypoglycaemia.  I also mentioned that I had issues with insomnia, vertigo and brain fog.   It's now one year since I started on the Benfotiamine 600 mg/day.  I am still experiencing the hypoglycaemia and it's not really possible to say for sure whether the Benfotiamine is helpful.  In March this year, I added B-Complex Thiamine Hydrochloride and Magnesium L-Threonate on a daily basis, and I am now confident to report that the insomnia and vertigo and brain fog have all improved!!  So, very many thanks for your very helpful advice. I am now less confident that the early morning headaches are caused by hypoglycaemia, as even foods with a zero a GI rating (cheese, nuts, etc) can cause really server headaches, which sometimes require migraine medication in order to get rid off.  If you are able to suggest any other treatment I would definitely give it a try, as these headaches are a terrible burden.  Doctors in the UK have very limited knowledge concerning dietary issues, and I do not know how to get reliable advice from them. Best regards,
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
×
×
  • 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.