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

Testing Is Finished

tiredofdoctors

Recommended Posts

tiredofdoctors Enthusiast
tiredofdoctors
Posted

Well, the testing is over -- blood tests negative, and the small intestinal villi look perfect. The GI surgeon said there is no way it's celiac. I was REALLY hoping that this was the answer. Now we still don't know what's destroying my brain and spinal cord. My neurologist wants me to go gluten free to stop the antigliadin antibodies (they're 1.1 units above normal), hoping that will at least slow the destruction. I'm tired, squeezed out like a tube of toothpaste and disappointed. Guess this means more doctors. I'm "doctored" out. If it weren't for the fact that whatever I have can eventually kill me, I'd stop. Good luck to all of you searching for an answer. Don't give up.

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

Celiac.com Sponsor (A8-M):


skbird Contributor
skbird
Posted

You can have negative reactions to gluten and have them affect your neurological health and test negative for Celiac. *Some* gluten reactions are Celiac, but not all of them. Look up gluten ataxia.

It might be very wise for you to avoid gluten. Do your symptoms improve when you are not consuming gluten? I think your neurologist is on to something.

I have two gluten sensitive genes - one is an indicator for neurological symptoms and the other can indicate gastrointestinal. Neither is a Celiac gene though and I'm unlikely to show damage in my gut. But I can tell you that gluten wreaks havoc on my body and I am certain that if I were to continue to consume it I will go the way my relatives have - with dementia, Alzheimers, colon cancer, bad gallbladders, ulcers, unsteady gait, etc etc etc.

Just because it's not Celiac doesn't mean gluten isn't bad for you (how's that for a double negative?)

Take care and keep checking in...

Stephanie

KaitiUSA Enthusiast
KaitiUSA
Posted

You could have a sensitivity to gluten but just not have celiac..yet. Maybe a trial period on the gluten-free diet to see if there are any changes would help.

tiredofdoctors Enthusiast
tiredofdoctors
Posted
  • Author

Thanks for the advice -- talked to my neuro -- he still wants me to go gluten-free, so you're right on the money. There are worse things that being gluten-free: namely, not being able to walk, talk, or move. I hope that it makes a difference. At minimum, I hope it keeps the destruction from continuing. I'm already in a wheelchair. I'm still going to be searching the message board for information -- you guys are a wealth of knowledge. Thank you for your help and your encouragement. I appreciate it.

gf4life Enthusiast
gf4life
Posted

I know that you are tired of the doctors and testing and all the poking and proding that they do, but I highly recommend the gene test from Enterolab. They check for the non-Celiac gluten intolerance genes (that Stephanie was mentioning above) as well as the Celiac genes, and it only involves a cheek swab. They will mail you the kit, you follow the instructions and mail it back. Easy as that. It will cost about $100, but it is nice to know if you have the genetic background. It helped me to confirm that I did need the diet despite my negative test results.

Another little piece of information is that you can be gluten intolerant despite the negative test results. They only check for the part of the disease that damages the intestines, but lately they are starting to recognise that for some the gluten damages the brain and their neurological functions become impaired. There have been a few articles on it lately. You are fortunate to have a neurologist who knows what he is talking about. Please listen to him.

My son also has DQ1 & 3 and is not conscidered "Celiac", but he is certainly gluten intolerant. His neurologist also supports him staying on the diet, as does his rheumotologist/immunologist, his ENT, and his GI doctors! We are fortunate that the doctors we have want my son healthy regardless of what the tests say. His health improves on the gluten-free diet and that is reason to stay on it.

God bless,

Mariann

tiredofdoctors Enthusiast
tiredofdoctors
Posted
  • Author

Marianne, thank you VERY much. As one of my topics stated, a second eye doctor was the one who was critical in facilitating the blood tests and the scope. He also said that I needed to have much more blood testing. I told him that I had had 37 immunological tests. His response was -- not that -- I think you need genetic testing. I'm oddly comforted by that, particularly given your answer. My biggest concern at this time is this -- by radiograph, you can certainly see breakdown of the cerebellum, and on several different views, you can see a lesion on the cervical spine (so we know it isn't artifact) -- my medical background lends me to believe that this damage is permanent, and perhaps my brain can re-route somewhat, but that to think that I will ever walk at least without a walker is just not realistic. Any thoughts or experience? Thank you again for your reply. God Bless you, as well. Lynne

gf4life Enthusiast
gf4life
Posted

Lynne,

All I can say is that anything is possible! You should try to be gluten-free as soon as possible (if you aren't already) and stick to it. Our bodies are amazing and have the power to heal themselves quite easily. You may never heal 100%, but maybe you CAN get rid of the walker! Just try to stay positive. I don't have any personal experience with that aspect of celiac disease, but you never can tell what can happen...

God bless you. I will keep you in my prayers.

Mariann

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

Celiac.com Sponsor (A8-M):


baggotlane Rookie
baggotlane
Posted

You may indeed not be celiac. There are other ways that similar (intestinal and neural) symptoms can occur. You mentioned the vertebra. I'd suggest you look there. Having problems in the upper vertebra (cervical section) is well-known to be a cause of pain in the arms, shoulders adnd hands. But it also affects the neural system in the stomach, leading to similar problems that celiacs suffer from.

I'd suggest you see a neurologist and have him talk too your gastroenterologist. They may suggest an MRI for the cervical area.

There is a much talk in these posts by people who make the assuption that everyone here is celiac. Most are, but that does not mean everyone. Before drawing false conclusions about what you thought was a celiac condition and getting upset because the tests did not support that hypthesis I'd earnestly suggest you have your doctor look for causes that are not celiac related.

Good luck, and let us know.

Andrew

Guest nini
Guest nini
Posted

I still believe that Wheat/Gluten is toxic for just about EVERYONE and is partially to blame for so many health conditions.

I hope you find the answers you seek, and get some relief soon.

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. 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...
    2. 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...
    3. 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...
    4. 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.
    5. Jsingh
      - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

      Hi, My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine...
  • 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):

  • Upcoming Events

  • Posts

    • 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.
    • Jsingh
      Son's legs shaking

      By Jsingh · Posted

      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
×
×
  • 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.