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

Not Celiac Despite Positive Test?

WhenDee

By WhenDee
in Doctors

Recommended Posts

WhenDee Rookie
WhenDee
Posted

This is not about me, but rather the "friend of a friend". Unfortunately I don't have much more information than what I give you here.

A young teenaged boy who was formerly very athletic developed severe neurological problems. Now he has to use crutches to walk.

He has been tested for everything under the sun. The only thing that came back positive was ONE marker for Celiac's.

A second doctor told his parents that it didn't matter, not to worry about gluten, that it was something else and they would keep searching. They still have no answers at this time.

What I'm wondering is - I had assumed that any Celiac's markers being positive meant you DID have it. I'm quite worried that one really ignorant doctor could ruin this young man's life. I wish I knew which blood marker had been positive, but unfortunately I don't know that much.

Can some of you more experienced chime in? Is it possible to have a positive marker and not have Celiac's? Or should I pass along how dangerous this is, and that they should seek another opinion?

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

Without knowing which test it was (and usually doctors perform only tests that they "know" to be celiac markers) I would say one positive result warrants a trial of the gluten free diet. You have absolutely nothing to lose and a whole life to gain. Go fo it!!

Roda Rising Star
Roda
Posted

Tell them to get a second opinion and retested with the whole celiac panel!!! It would be a shame to see this kid's life go down hill unecessarily by still eating gluten.

sandsurfgirl Collaborator
sandsurfgirl
Posted

I know some people who were extremely ill who only had one marker for celiac come back positive including myself. After going gluten free our lives changed dramatically. He MUST go gluten free to see if it changes him. That poor kid!

That doctor is horrible for doing that to the kid. He has a marker for celiac and he is on crutches. Why on earth would a doctor encourage him NOT to try the gluten free diet???? It's not a pill. There are no negative side effects.

Please have his family visit this board.

Skylark Collaborator
Skylark
Posted

There is a somewhat unusual neurological form of celiac disease, where the autoimmunity is directed against the nervous system. Only one marker (anti-gliadin) typically comes back positive because the usual celiac panel is looking for gut antibodies. Anti-gliadin is considered a weak marker for classical celiac disease so most doctors would misdiagnose it. You might print these two abstracts for them.

Open Original Shared Link

Open Original Shared Link

sandsurfgirl Collaborator
sandsurfgirl
Posted

There is a somewhat unusual neurological form of celiac disease, where the autoimmunity is directed against the nervous system. Only one marker (anti-gliadin) typically comes back positive because the usual celiac panel is looking for gut antibodies. Anti-gliadin is considered a weak marker for classical celiac disease so most doctors would misdiagnose it. You might print these two abstracts for them.

Open Original Shared Link

Open Original Shared Link

Skylark, when are you going to write a celiac book? You have so much information. Love it!

I don't remember which marker was high for me, but it was triple. My doctor was uncertain but I just knew in my gut that it was the answer. For years I knew there was something going on with wheat so I was gluten light. I didn't eat a ton of breads and pasta, etc. I think if I had been a full boar gluten eater my tests would have come back differently.

My son went mostly gluten free when I did just because I was the one preparing food. When we tested him 6 months later he came up negative on everything. No way was I going to challenge a 6 year old. He made his own choice to go gluten free because he was tired of being sick, tired of throwing up for no reason, tired of tummy pain and nose bleeds. The doc said she thinks he has celiac but his gluten light diet skewed the results.

The testing is tricky at best and downright faulty at worst.

Skylark Collaborator
Skylark
Posted

Skylark, when are you going to write a celiac book? You have so much information. Love it!

I've thought of it, but it's a lot of work for something I'm not sure anyone would buy.

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

Celiac.com Sponsor (A8-M):


Di2011 Enthusiast
Di2011
Posted

I've thought of it, but it's a lot of work for something I'm not sure anyone would buy.

I would.

Reliable, laymens language but in-depth, technical where necessary. Can't get much better than that :)

Takala Enthusiast
Takala
Posted

I have the neurological form of side effects from gluten intolerance. Possible to have even no markers or not high enough on a scale and be truly messed up from gluten. Got the holes in the brain to "prove" it.

I was never skinny nor had the chronic wasting nor D. I had some lactose intolerance by the time I was in my thirties. Therefore, it must be something else. Even the arthritis was sero - negative.

Was told more than once "probably M.S." or "probably lupus." And when these tests never panned out, inspite of the obvious damage which they observed earlier, and was available to them on scans, the sonsa***ches had the nerve to suggest "IAIYH." Because that is easier than saying "I was wrong. I do not know. You are correct to avoid grains."

If I had not had a.p. science classes in jr and senior high, which gave me a basis for being inquisitive AND how to experiment (...upon myself), I'd probably be dead by now, if I had been medically conventionally treated.

Tell these people I don't use a cane anymore, unless I'm hiking downhill on a difficult trail, and I have regained most of the feeling in my hands, legs, and feet. (some permanent nerve damage from the c spine problem). I have regained my color vision in the one eye, and my night vision. I'm only dizzy when I get cross contaminated. And I don't have any blood tests to show for it.

There are certain physical characteristics we tend to have, like very pale skin, shorter waisted, longer legged, crooked teeth before braces, dryer skin. Certain ethnic heritages from different parts of the world (Irish English, in the new world, Native American) that live closer to the Arctic circle tended to have higher incidences of MS, celiac, auto immune diseases such as diabetes. Anyone can go to wikipedia and look up the HLA DQ2 and HLA DQ8 articles and see if anything rings a bell. Family history is another clue, if parents/grandparents had certain sicknesses that are related to celiac. I am pretty sure I am third generation, and got it (tendency) from both sides of the family tree.

You only let a bad doctor ruin your life, if you let them tell you to do the wrong thing. Ignoring a positive test result is one of those wrong things.

Archived

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

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


  • Member Statistics

    • Total Members
      128,874
    • Most Online (within 30 mins)
      7,748
    LeeD
    Newest Member
    LeeD
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      71.3k
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      How long after being diagnosed with Celiac do you feel better?

      By trents · Posted

      Thanks for sharing, Karen. Certainly a needed reminder what we already knew (and I've posted many times on this forum) but sometimes forget, namely, autoimmune disorders tend to cluster. Where one is found, you can look for others to show up eventually. The thing that is unusual in your son's case is the onset of several of them at such a young age. My sister in law, who is in her early 60's has Crohn's and struggles with constipation so I don't think that is unusual with Crohn's. If nothing else, it's the outcome of not eating much because of the pain. Now that you know what is going on with your son and the Crohn's, we hope he is beginning to improve.
    • Nathan.
      How long after being diagnosed with Celiac do you feel better?

      By Nathan. · Posted

      Hi there. My son is turning 16 this month. He had an endoscopy and biopsy to confirm celiac. He went gluten-free and his pain never got any better. I think it got worse. Months went by. The pain started around 7th grade. He missed a lot of school in 8th grade, and a whole lot in 9th grade. He couldn't go to school in 10th grade. All along the gastroenterologist prescribed Hyoscyamine, didn't help at all. Cyproheptadine, no less pain. Peppermint oil, ginger, Miralax, Senna. Doc said he was constipated, but I couldn't get him to have Miralax daily. Eventually he went on Linzess and no senna or Miralax. Sorry this is long, there will be a point.  We gave his school not just a doctors not, but everything, and U of M makes a lot of notes. They still turned us in for Truancy.  I didn't get him enrolled in online school fast enough.  The school would not recommend an online school and i didn't know which one to choose.  Doc thought it was nerve pain and mental. He recommended the u of m my pain program.  Nathan did so good, 3 days a week supposed to be for 4 weeks.  Never missed, always on time.   After two weeks, they discharged him. Said it was not  benefitting him.  Pain went on. I had been asking if there were any other test they could do. Ultrasound, colonoscopy. Doc said we can do it, but I don't think we'll find anything.  Finally he had a colonoscopy and another endoscopy.  Guess what, they did find something. They found a ton of tiny ulcers everywhere, from the esophagus to his rectum. They think Crohn's. I understand they didn't check for that because he was more constipated, not much diarrhea. He is getting an MRI with contrast on Sunday. Also they want him to do a cal-protectin (give a poop sample). Then an appointment on the 16th to talk about treatment. Then the probation officer on the 17th. In the meantime he is taking Budesonide extended release.  $276.00 for 30 pills, and that's with insurance. Also he was diagnosed with hyperthyroidism, Graves disease a few months ago. If it is for sure Crohn's,  it will be three autoimmune diseases. If someone is gluten-free for a month or more, and the pain is no better, don't stop looking. I was beside myself. Did they think he was exaggerating, lying? I was considering taking him to a holistic doctor, who would probably recommend Peppermint oil and ginger.  He's such a good kid. Kind of an introvert. He was on the 9th grade soccer team. He would try to go to practice and kept having to stop, the pain was that bad. Every time he ate, it didn't matter what, gluten-free chicken tenders, mac and cheese, pizza, ice cream, all gluten-free, he would eat a normal amount but stop and say, I can't eat anymore, my stomach hurts.  If anyone reads all this, thank you. I had a gut feeling, no pun intended, that he had an additional problem. They found celiac and stopped looking. If you don't feel better, keep on your doctor to check further, keep looking.   Take care, Karen  
    • Scott Adams
      Recent blood test results check in - TTG- IGA

      By Scott Adams · Posted

      Most likely cross-contamination I believe.
    • cristiana
      How long after being diagnosed with Celiac do you feel better?

      By cristiana · Posted

      I think it takes different people different amounts of time, but in my own case I had pain,  bloating and loose stools for some time, exacerbated by a lactose intolerance, which eventually went.  I would say the really bad diarrhea got better quite quickly, but the bloating pain carried on for a few months, until I was told to give up lactose for a few weeks.  That helped enormously and once I realised milk and yoghurt was the cause, after a short break I went back to lactose very gradually and felt a lot better.  Now I can tolerate it well. From Coeliac UK "The enzyme lactase is found in the brush border of the small intestine. This is why people with coeliac disease can be deficient in lactase at diagnosis. Once established on a gluten free diet, the gut is able to heal and lactose digestion returns to normal. Lactose intolerance is therefore usually temporary." So if this helps your daughter, this doesn't mean you have to give up lactose forever, especially as dairy is such a good source of calcium for growing kids.   Bear in mind you should be able to reintroduce it. As for fatigue, this can be due to vitamin and mineral deficiencies,such as iron, vitamin D and B12.  Were these levels tested?  If not, I would suggest you get them done.  If your daughter is deficient in these, it is vital you address the deficiencies, and get the tests redone in a few months, particularly the iron, because too much can be dangerous.
    • knitty kitty
      Inhaler problem

      By knitty kitty · Posted

      Hello,   The medication in these inhalers can cause a thiamine deficiency if used by someone already low in thiamine.  We don't absorb sufficient amounts of vitamins and minerals due to the inflammation and damage done to our villi in Celiac Disease.  Even a long term strict gluten free diet may not provide sufficient amounts of vitamins and minerals.  There are eight B vitamins that all work together.  Thiamine deficiency often shows up first because our bodies use so much of it and it can't be stored very long. Thiamine deficiency symptoms can appear in as little as three days.  Without thiamine, the other B vitamins may not be able to function properly.   Thiamine is needed to clear lactic acid accumulation caused by the inhalers: Shoshin beriberi provoked by the inhalation of salbutamol https://pubmed.ncbi.nlm.nih.gov/12951730/    Significant Lactic Acidosis from Albuterol https://pmc.ncbi.nlm.nih.gov/articles/PMC5965110/ Albuterol-Induced Type B Lactic Acidosis: Not an Uncommon Finding https://pmc.ncbi.nlm.nih.gov/articles/PMC7263006/ Lessons of the month 1: Salbutamol induced lactic acidosis: clinically recognised but often forgotten https://pmc.ncbi.nlm.nih.gov/articles/PMC6964186/ An Overview of Type B Lactic Acidosis Due to Thiamine (B1) Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC10731935/   Thiamine has antifungal and antibacterial properties.  Thiamine helps keep Candida in check.  Thiamine helps keep SIBO in check.  Thiamine helps with black mold, Aspergillis infection.  Riboflavin helps fight Candida infection in the mouth. Riboflavin Targets the Cellular Metabolic and Ribosomal Pathways of Candida albicans In Vitro and Exhibits Efficacy against Oropharyngeal Candidiasis https://pubmed.ncbi.nlm.nih.gov/36625571/   Thiamine deficiency can make ones voice hoarse and can cause localized edema.  Niacin deficiency can make ones voice hoarse.  (Niacin deficiency and Thiamine deficiency can each cause irritability, agitation, and lability.) Hoarseness in pellagra https://pubmed.ncbi.nlm.nih.gov/21507655/ Hidden Hunger: A Pellagra Case Report https://pmc.ncbi.nlm.nih.gov/articles/PMC8152714/   Anesthesia can cause B12 deficiency.  B12 deficiency can show up as mouth sores and geographic tongue, diarrhea, and dementia. Vitamin deficiency, a neglected risk factor for post-anesthesia complications: a systematic review https://pmc.ncbi.nlm.nih.gov/articles/PMC11823251/ Neurologic degeneration associated with nitrous oxide anesthesia in patients with vitamin B12 deficiency https://pubmed.ncbi.nlm.nih.gov/8250714/ Subacute combined degeneration of the spinal cord following nitrous oxide anesthesia: A systematic review of cases https://pubmed.ncbi.nlm.nih.gov/30144777/ The Effect of Vitamin B12 Infusion on Prevention of Nitrous Oxide-induced Homocysteine Increase: A Double-blind Randomized Controlled Trial https://pmc.ncbi.nlm.nih.gov/articles/PMC4052402/     Eating a diet that is heavy in carbohydrates can precipitate a thiamine deficiency.  As the amount of carbohydrates consumed increases, additional thiamine is needed, otherwise the carbs will be stored as fat.   Thiamine deficiency disorders: a clinical perspective https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/   Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/   The deficiency symptoms of some of the B vitamins cause gastrointestinal symptoms that resemble the same symptoms as when being glutened.   Thiamine deficiency can present as vomiting, diarrhea and abdominal pain (Gastrointestinal Beriberi).  Niacin deficiency can present as diarrhea (Pellagra = diarrhea, dermatitis, dementia, then death ).  B12 deficiency can present as diarrhea or dementia.  Not everything is caused by hidden gluten.  Gluten free processed foods are not required to be enriched with vitamins lost in processing like gluten containing foods are. Blood tests are not accurate measurements of vitamin levels, but do talk to your doctor and nutritionist about supplementing with the eight B vitamins, Vitamin C, the four fat soluble vitamins and minerals like magnesium.  Your physician can give you a shot of B12 before anesthesia administration.   By the way, Celiac Disease genes have been traced back to having originated in Neanderthals.  I'm not a singing teacher on the net.  I earned a degree in Microbiology after studying nutrition because I wanted to know what vitamins are doing inside the body.  I've experienced nutritional deficiencies myself. Hope this helps!  Keep us posted on your progress!
×
×
  • Create New...