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

Diagnostic frustration. Help!

Kaj242

Recommended Posts

Kaj242 Rookie
Kaj242
Posted

Hi there, I just got my celiac gene results back and I am positive, I carry the gene. I have taken matters in my own hands by healing my gut with chiroprator care. I feel amazing after 34 days of autoimmune paleo. However I am frustrated the doc will only diagnose celiac with biopsy. Does anyone  happen to know if having family history of celiac, having several of celiac symptoms, having the celiac gene, all of symptoms disappearing after eating gluten free and  can ONLY be gluten sensitive?? My 3 yr old daughter looking back maybe celiac, she failed to thrive, had acid reflux/colic as baby (she was breastfed, and I was eating gluten then) and now she has tummy aches, loose stool, grey/white color which concerns me. Her peditriacian is waiting to see what is going on with me to do any testing sinces she's 3. I feel overwhelmed that Id have to feel crappy for several weeks for a biopsy, which I am currently not considering. I have a 1 yr and 3 yr old who both need me, and need me well. Sorry for all the info, I am trying to find answers......

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

Welcome!  It is a shame that your chiropracter ordered a gene test, but failed to do a celiac blood panel which would be more definitive.  Unfortunately, you need to be consuming gluten for those blood tests to be valid (8 to 12 weeks).  About 30% of the population carries the celiac gene.  This test most often helps to exclude celiac disease and not to diagnose it.  

Your choices are to consume gluten for a month for a biopsy or declare yourself gluten intolerant and continue on with a gluten free diet.   The second option is possible.  My hubby went gluten free per the poor advice of two medical doctors.  Gluten makes him sick.  Does he have celiac disease?  We will never know.  He will tell you that I have had it easier with my diagnosis in terms of medical and family support.  It made it easier for my child to get and to continue to get tested too.

Only  you can know what is best for you and your family.  I strongly recommend more research.  You are your best health advocate.  

Take care.  ☺️

Kaj242 Rookie
Kaj242
Posted
  • Author

That is my current conflict. The definitive of the diagnosis . It was my gi doc that ordered gene test in hopes to rule out celiac. I did the antibody blood test but that was after 10 day gluten free, followed by 7 days of eating lots of gluten, also in hopes for clear answer.  The antibodies were negative. I've also been told those can be false negative?!  So frustrating . My chiropractor is fabulous, told me and explained so much. He although doesn't find diagnosis as important which I sorta understand. The treatment is the same. But like you said its easier with diagnosis for support .  I know lots of people carry gene and never get celiac.  I've had a gut (irony) that I do have celiac, not just because it's more definitive, but because it fits a handful of many years of symptoms.  

Again I wonder with my combo 

-positive gene test

-family history of celiac

- several celiac symptoms (migraines, many gi, most recently elevated liver enzymes that sky rocketed after doubling gluten in hopes for clear gluten antibodies )

-symptoms improved with with removing gluten on two occasions

- after reintroduced gluten symptoms magnified

that the probability for celiac is MORE likely vs gluten intolerant?

 

nvsmom Community Regular
nvsmom
Posted

Did you get all the tests done?  This report goes through them all: Open Original Shared Link

One negative test is pretty common which is why multiple tests are best.

You have the positive genes, which 30% of the world also has. Only about 1 in 40 of those will develop celiac disease though. The genetic tests have not yet been linked to NCGI though.

At this point, it could be either. You can either go strictly gluten-free or do the tests and suffer through the gluten challenge.  Neither are great options. :(

I would advise you to get your kids checked and then try the gluten-free diet for a good 6 months if they have symptoms. Going gluten-free won't hurt them and could help them if gluten is the issue.

BTW, my kids were negative but their health improved remarkably after going gluten-free.

Good luck!

  • 1 month later...
Kaj242 Rookie
Kaj242
Posted
  • Author

Update: I decided to email university of Chicago celiac center since I live in suburb of Chicago and got an awesome response, medical director, said: ( dr gaudalini)

 

 As for the mom, yes I would think it is fair to state she is more likely to be celiac than "gluten intolerant", but I still would personally recommend reaching a definitive diagnosis (not necessarily by a biopsy) before undertaking a life-long commitment to a strict diet. Contacting Dr. Kupfer for advice would be recommended.
As for the 3 year old girl, I'll be happy to see and assess her. Please do not begin a gluten-free diet without having first checked her blood levels of antibodies!! We now have simplified diagnostic procedures that may avoid the biopsy, but we need to act soon. 

I cried. Finally some direction! We had my 3 yr olds appt this past Thursday and he was thinking celiac was less likely since she's gaining and growing... He did do blood test though. My daughter was a trooper through the blood draw. 

Tuesday I got the results:

am in TEARS, there's nothing like a mothers intuition. she tested a STRONG positive (ttg 87 for a 3 yr old) Celiac on blood test, along with low iron and elevated liver enzymes (JUST LIKE ME!) We have to do an endoscope, she will be put under to confirm,I am so weirdly grateful for going through this myself to suspect her and I am so grateful to not let the other doctors (my general doc) make me feel crazy, believe me i was feeling it! Things really do happen for a reason.

conclusion: I'm certain I am celiac 

frustrated still though we can't get in til feb 16 for endoscope. I feel horrible she has to continue suffering. Her preschools teachers have noticed new behaviors. This past week she had irritability with them,  usually only irritable with me ( as kids are most comfy with mom) and teachers said she looks pale before lunch. It's got the malabsorption I'm sure. I'm that mom to call and will do so to try to get in earlier so she can start HEALING!

question her ttg was high, 87. And from my understanding children her age may not even show a positive ttg, shouldn't this be more then enough to get endoscope asap??? Not 4 wks out. Yes I get others are scheduled but if it was your kid as they say what you do??

kareng Grand Master
kareng
Posted

It is probably considered non-emergent.  You could see if you could get on a cancellation list?  Or call everyday to see if anyone has cancelled for the next day? 

Kaj242 Rookie
Kaj242
Posted
  • Author

Yes I plan on calling.  I think she already has me on the cancelation list. I am frustrated with the whole process, especially since it has been most of our journey. I have read and researched so much, advocated for us both like it was my job. I hope to get in sooner. I again feel blessed to follow my intuition and able to give life to my daughter twice!? Such an amazing gift. 

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

Celiac.com Sponsor (A8-M):


Archived

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

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


  • Member Statistics

    • Total Members
      130,304
    • Most Online (within 30 mins)
      7,748
    Jacquie Whitt
    Newest Member
    Jacquie Whitt
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • lmemsm
      Ocd making gluten fears unmanageable. Need advice

      By lmemsm · Posted

      When they give you a blood test, there's a range they consider low to high from the results.  It's not based on how much vitamin you're taking.  My blood tests were low and then I took 5000 IU and they went too high on the blood test.  I also get exposed to D from the sun and I live in a very sunny area and I get D in some foods I eat.  I was very annoyed with the doctors because they weren't paying attention to the blood test results in order to help me figure out the optimum dose for me.  They just told me to take it when it was low on the blood test and didn't pay any attention after that.  Too much of a good thing is not a good a thing.  I hope the medical field knows enough to really know what the safe range is.  However, I would not go by just intake or sun exposure since how much each person can absorb is different.  That's why I wanted actual testing to determine my levels. Also, interesting points, about the choline.  I just saw some information about it yesterday and was thinking I'd better check if I'm getting the RDA.  This is the second mention I've seen on this in two days, so maybe the universe is trying to tell me something. If I get cramps in my feet, salt usually helps with it.  It usually means my electrolyte levels are off somehow.  I bought some electrolyte water from Sprouts.  I also try to add salt (Himalayan or sea) to my meals.  I always hear cut out salt from medical professionals.  I don't think they realize that when you make things from scratch and eat unprocessed foods, you've probably cut out a lot of the salt in an average American diet.  It can be easy to be too low on salt if you make things yourself. I've read selenium is important to balance iodine intake and one shouldn't have too much of one and not enough of the other.
    • Wheatwacked
      Ocd making gluten fears unmanageable. Need advice

      By Wheatwacked · Posted

      How high is too high?  I take 10,000 IU vitamin D3 every day.  My blood is stable at 80 ng/ml (200 nmol/L).  Even at 10,000 a day it took 8 years to raise it to 80.  Higher levels of 25(OH)D in blood can moderate the autoimmune attack.  Vitamin D Is Not as Toxic as Was Once Thought Lower vitamin D levels have also been associated with increased OCD symptom severity.  This is a most dangerous popular belief. As mentioned you are suffering from vitamin and mineral deficiencies.  Part of the recovery, that is never explained by doctors, is replenishing your deficits.  Celiac Disease is a disease of malabsorption.  The Western diet is a diet of deficiency.  That is why many processed foods are fortified.  Gluten free foods are exempt.   "I’ve been completely asymptomatic since diagnosis."  There are 200 symptoms that can be caused by Celiac Disease and the malabsorbtion it can cause.     • "Floating, undigested stools for over a year now. Dont think its related to celiac as it was like this since im 17 and not 13-16( i got diagnosed at 13). " Many are misdiagnosed as gall bladder disease.  Choline is needed to create the bile salts needed to digest fat.  90% of our population is deficient.  Eggs and beef are the best source.  The RDA (minimum daily allowance is 500 mg to 3500 mg daily.  One egg has 27% DV.  Broccoli, chopped, boiled, drained, ½ cup only has 7%.  Low choline can cause Non Alcoholic Fatty Liver Disease.   Choline and Risk of Neural Tube Defects in a Folate-fortified Population; Could we be overlooking a potential choline crisis in the United Kingdom?;   Choline was formerly called vitamin B4.  I prefer phoshphatidyl choline for supplementation as it is the form we get in food.   • Chronic back pain started gradually, worsens with movement, lots of cracking/popping sounds.  Vitamin D deficiency may be linked to chronic back pain, But I took levothyroxine for slightly low FT4 levels.  I supplement Iodine by taking Liquid Iodine.  50 mcg per drop.  The RDA is 150 mcg to 1000 mcg in the US.  In Japan it is 150 mcg to 3000 mcg.  I take 600 mcg a day. Since 1970 the intake of iodine has decreased in the US by 50%.  Hypothyroidism has increased 50%.  Insufficient iodine leads to the thyroid gland working harder to produce these hormones, and if it cannot keep up, hypothyroidism can develop, according to the Mayo Clinic.   Iodine Insufficiency in America: The Neglected Pandemic.   I see improvement in muscle tone, healing, brain fog since taking the Liquid Iodine.  I could not eat enough seaweed. B1 stops the cramps in my feet B6 speeds up gastric empying and works on my freezing toes at night.  250 mg several times a day sometimes.  Also seems to be helping bowel regularity. 5 mg Lithium Orotate helped me with overthinking.   10,000 IU vitamin D to control autoimmune, mental health. 500 mg Thiamine - neurologic symptoms 500 mg Nicotinic Acid - increase capillary blood flow 500 mg Pantothenic Acid - creates energy from glucose Krebs Cycle 1000 mcg B12 - creates hemoglobin for oxygen transport 500 mg Taurine - essential amino acid, a powerful antioxident that we make indogenously so it is officially labeled "Conditional Essential" as Choline used to be, but not enough when sickness increases inflammation. reduces Reactivite Oxygen Species (ROS are are free radicals.). 840 mg Phosphatidly Choline x 3 - essential for fat digestion, gall bladder, liver, brain fog, cell membranes, prevent congenital spinal defects (along with B6, B12, folate, Taurine. Iodine - muscle tone, testosterone, hyper and hypo thyroid, slow healing.  600 mcg of Liquid Iodine.  Sometimes twice a day, usually added to a drink.
    • Scott Adams
      Finding gluten free ingredients

      By Scott Adams · Posted

      I completely understand the frustration of finding reliable gluten-free ingredients—it's exhausting when trusted products disappear or companies don't respond to safety inquiries. For teff flour in bulk, check out Azure Standard or Bulk Foods; both often carry gluten-free grains in larger quantities and clearly label dedicated facilities. For soy flour, Anthony's Goods tests for gluten and offers bulk options, though always verify their current certifications. For beans, peas, and lentils, Palouse Brand is a great choice—they're GFCO-certified and transparent about their farming practices. As for lentil elbow macaroni, Explore Cuisine offers similar pastas, though cross-contact policies vary. When companies don't respond, I lean on third-party certifications (GFCO, NSF) or stick with brands like Jovial or Edward & Sons that prioritize allergen safety. It's a constant hunt, but hopefully these leads help! Have you tried local co-ops or ethnic markets for teff? Sometimes they stock bulk African or Indian brands with clear labeling.
    • Scott Adams
      beans in dessert recipes

      By Scott Adams · Posted

      Beans in desserts are a fantastic way to add moisture, structure, and protein while keeping recipes gluten-free. Black bean brownies are a classic, but other beans like adzuki and pinto can also work well—adzuki beans are naturally sweet and often used in Asian desserts, making them great for cookies or cakes. Lentils, especially red lentils, blend smoothly into batters and can replace flour in recipes like blondies or muffins. Since you’re allergic to chickpeas, you might try navy beans or cannellini beans for a milder flavor in vanilla-based desserts. For less crumbliness, blending cooked beans into a paste helps bind the dough, and adding a bit of xanthan gum (if tolerated) can improve texture. If you’re experimenting, start with recipes that replace half the flour with bean purée before going fully flourless. Have you tried using aquafaba (bean liquid) as an egg substitute? It works wonders in gluten-free baking too!
    • lmemsm
      Ocd making gluten fears unmanageable. Need advice

      By lmemsm · Posted

      This may make you feel better about cross-contamination: https://nationalceliac.org/celiac-disease-questions/do-i-need-new-designated-pans-plates-and-utensils/ https://theceliacscene.com/rethinking-cross-contamination-no-need-to-be-so-careful/ I use Tom's of Maine or a toothpaste that states it's gluten free.  I have allergic reactions to some toothpastes so some of the toothpastes in health food stores are usually safer for me. They're typically gluten free as well. Spices can contain cross-contamination from gluten.  There are a few lists online of spices that are safe for celiacs.  I also grow my own herbs and use them in place of store bought when I can.  I think Badia lists their spices as gluten free and Spice Lab has some gluten free too. Knitty Kitty has a great point about nutritional deficiencies and B vitamins.  I got a lot of aches and pains when I got off gluten.  I tried to replace wheat with other healthy grains like teff, buckwheat and sorghum.  Limiting one's diet too much and not getting enough vitamins, can make someone feel worse.  A lot of the gluten free foods in the stores are made with lower quality ingredients than the wheat varieties.  I try to replace all my foods with homemade options.  Then I know the quality of the ingredients and which vitamins I may be high or low in.  Probiotics or prebiotics can help with bathroom issues.  Better to get them in foods if possible and not pill form.  My doctors keep recommending magnesium too.  It's not supposed to be taken alone, but they don't seem to care about that.  It's easy for vitamin D to be low too.  That was another thing doctors told me to take.  Unfortunately, they didn't monitor it and it went too high.  Again, better from natural sources like food and sunlight.  However, supplementing can help if you're not getting enough.  Some sources say to take D with K2.  You may want to have iodine levels checked.  If you add iodine, make sure to get sufficient selenium for thyroid.  You can get iodine naturally in most seaweed.  Nori may also be one of the few non-animal sources for B12.  Brazil nuts are a good source of selenium and you only need a few a day to meet RDA.  Some brands of nuts specifically say gluten free.  Unfortunately, there are issues with Brazil nut production and they're much harder to find this year. The more you can vary your diet the better.  One study said aim for at least 30 different foods in a week.  You might want to try kiwi fruit.  There were some studies that said eating kiwi improved mood.  It also has a covering which most people don't eat, so that should protect what's inside from contamination. I've limited my diet quite a bit over the years because of migraines, so I know how uncomfortable it can be finding safe foods.  However, I'm afraid limiting diets like that may actually be causing more harm than good.  It's something I'm trying to work on.  I keep trying to expand the number of foods I eat and my recipe repertoire.  I made a list of brands of foods that I've found that are gluten free so I have a guide when I'm shopping.  
×
×
  • Create New...