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

Waiting On Test Results

brileighlevi

Recommended Posts

brileighlevi Newbie
brileighlevi
Posted

Hi! I'm new here. My daughter is currently being tested for celiac disease at my request. She's had bad gastro issues including encopresis at around 3 years old and off/on constipation for years. It's been treated by doctors with Miralax and fiber supplements but it's never made much of a difference and obviously isn't making it disappear. She's also always been small but has reached a point where she's had nearly zero growth for a year or more. She's 8 (bday in Aug) at 49" tall and weighs 46# (up to 48# on one day at the doctor). This leaves her in the 8% for height and 4% for weight for her age. She has a host of other things wrong with her including fatigue, dry/brittle hair that falls out, white spots/decalcification on her teeth (showed up one very first baby tooth, been present all her life), joint pain, tingling hands legs and feet, bloating, gas, acid reflux/heartburn, occasional hoarseness, and nausea. I found a pediatric gastroenterologist that would see her with no referral and started testing in Nov. A endoscopy and sigmoidoscopy (sp?) showed small intestine inflammation that "could" be a sign of celiac although they ruled out everything else. They did blood work that they say came back negative for celiac but are now going to run a full celiac panel with genetic markers. We actually had blood work drawn last week but the lab screwed up and reran the tests originally done and now I have to take her back in for more blood work. I'm calling tomorrow to insist they send me copies of all tests run so I can look at it and get numbers. They did diagnose her with lactose intolerance. The doctor says she isn't sure about the celiac but that they have ruled out everything else although she "could just have IBS." ???? I don't see how that is even possible or would cause all her symptoms. I'm really stressed right now especially with them messing up her tests. I knew this would be a long road going in but it's turning out to be more stressful than I expected. I almost wish now that I'd just gone gluten free instead of going to the doctors first :(.

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

Celiac.com Sponsor (A8-M):


mall Newbie
mall
Posted

I am so sorry that you are going through this! My three year old has had some of the same issues as your daughter and it can be a very hard process but she did eventually get a diagnosis and is now doing much better. My prayers are with you! 

brileighlevi Newbie
brileighlevi
Posted
  • Author

Thank you for the support and concern. I'm glad you got an answer for your little girl! I don't know what's going on with mine. The doctor seems to think it isn't celiac but it's the only thing I've come up with so far that could potentially explain all her symptoms. She also has some cold intolerance and weird smelling breath (even after brushing, mouthwash, anything) that I forgot to mention in my first post. I got the doctor to send me reports of what has been done so far although we're still waiting to run genetic tests and some other tests. Here's what we've got so far:

 

Iga    151 mg/DL

Tissue Transglutaminase Iga    <1 u/mL

TSH    3.35 mcIU/mL

 

They also did a serum CMP. The doctor says that it doesn't show celiac but they're going to run the genetic tests and see what they say because of her inflammation. I looked at her charts online though and they listed her conditions as LLQ pain, constipation, periumbilical pain, and duodenitis. They however didn't list the lactose intolerance they said she had??? I'm so confused. I know something is wrong and no one else seems to care.

frieze Community Regular
frieze
Posted

that TSH is high, that could explain the dry brittle hair.

and, of course, that is very incomplete testing.

brileighlevi Newbie
brileighlevi
Posted
  • Author

Is that high? I thought so but the doctor didn't mention it and I wasn't sure. Of course we're seeing a gastro not and endocrinologist so that may be why she didn't say anything. What should it be? Do you have any ideas or suggestions on what to do to find out more about that? 

 

I got the lab orders in today. They've ordered a gliadin Ab and GIA celiac genetics (HLA typing for celiac disease). Is this sufficient or is there anything else I need to request before they do the blood draw? Thanks so much for the replies and help. I knew from lurking on this board that this would be a long process and I had *some* idea of what I was getting into but I'm still lost as to what to do with testing and such.

brileighlevi Newbie
brileighlevi
Posted
  • Author

They also ordered a anti endomysial antibody screen. Is this with the other tests they set up going to make for complete testing? I want to make sure that they get everything since this will be the 3rd time doing blood work that my daughter hates. I don't want to put her through it again for one more silly test or something. Thanks so much for the help everyone. It's making me feel better just to have someone to talk to about this stuff.

GF Lover Rising Star
GF Lover
Posted

I would also request that she be tested for nutritional deficiencies if you haven't already.  That will be an important part of the puzzle.

 

Good Luck to you,

 

Colleen

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

Celiac.com Sponsor (A8-M):


StephanieL Enthusiast
StephanieL
Posted

I *believe* TSH's should be closer to 1 but values will vary by lab.  I would ask for a FULL thyroid test including T3, T4 and free T3 and T4 as well to get a full picture.

africanqueen99 Contributor
africanqueen99
Posted

As a former Thyroid Cancer patient I know way too much about TSH.  It is currently recommended that patients be between .1-1.0 to be in the normal range.  "Old School" doctors say anything below 3.0.  "Super Old School" recommend below 7.0.

 

To keep the cancer from regrowing my TSH is kept at .01 and that's my normal - I'm pretty sure that I'd be showing some really horrible side effects at 3+ - cranky, foggy brained, exhausted.

 

My seven year old also went over a year of no growth (in fact she lost weight during that time).  That was the serious clue to push her over into the celiac DX.

StephanieL Enthusiast
StephanieL
Posted

Thanks for the clarification on the TSH levels.  I know when I was questioning thyroid issues with DS (after guidance from here thank goodness!)  I called the two endocrinology departments and asked what the reference ranges were for TSH.  One was .5-5  :o  one was .5-2 I think which was closer to what I was looking for. Needless to say we went with the second ;)

brileighlevi Newbie
brileighlevi
Posted
  • Author

Thanks so much for the helpful info on the TSH! I'll definitely be getting the other tests done. I am hoping to get a full nutritional panel soon as well. I'm not sure how helpful her primary is going to be with this but I may use AnyLabTestNow. They offer all of those tests. I definitlely want to get the thyroid checked now. I wasn't sure how likely it was for her to have hypo type thyroid issues and still be as tiny as she is.

 

We had our labs drawn yesterday and are back on the wait. Results should be in within 2 weeks. I'm going to check on those other tests now though. Thanks everyone! It really helps ease this mama's mind to have experienced mamas to consult!

  • 3 weeks later...
brileighlevi Newbie
brileighlevi
Posted
  • Author

We got results back today. They said her antibodies are normal and she doesn't have any genetic markers for celiac disease. So no celiac. The nurse seemed happy like this was a good thing but I'm concerned now because I don't know where else to turn. :(

GottaSki Mentor
GottaSki
Posted

We got results back today. They said her antibodies are normal and she doesn't have any genetic markers for celiac disease. So no celiac. The nurse seemed happy like this was a good thing but I'm concerned now because I don't know where else to turn. :(

 

Now that testing is complete....I strongly suggest you remove all gluten for at least three months due to the inflammation of the small intestine and symptoms.

 

Non-Celiac Gluten Sensitivity has many of the same symptoms as Celiac, but there is no test other than elimination of gluten to monitor for symptom improvement.

 

Hang in there :)

nvsmom Community Regular
nvsmom
Posted

I agree with Lisa, try the gluten-free diet for 3-6 months and see what happens.  My kids tested negative too but they had health issues so we tried the diet anyways. Their health has obviously improved and behaviour changed as well. NCGS can really impact a child's health, just like celiac disease can... that inflammation can really mess up one's health.

 

Keep a symptom and food journal to help you keep track of changes.  Best wishes.

brileighlevi Newbie
brileighlevi
Posted
  • Author

We started yesterday. I haven't switched out dishes or anything though for cc. I did buy her new tupperware containers for her breakfast, lunch, and snack at school. We started recording food and notes on sleep or pains and such yesterday. I don't know what else to do.

GottaSki Mentor
GottaSki
Posted

Journaling food & symptoms is a big undertaking....thankfully it is worth the effort to weed out possible dietary solutions to health issues.

There is no need to replace dishes, utensils or most cookware. Nonstick pans, toaster, cutting board, colander should be avoided.

If you haven't - give the Newbie 101 thread a good read. I'm on mobile version...so let us know if you the link.

Hang in there :)

nvsmom Community Regular
nvsmom
Posted

https://www.celiac.com/forums/topic/91878-newbie-info-101/

Best wishes.

GottaSki Mentor
GottaSki
Posted

Thanks Nicole :)

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. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748
    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.