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

What Test Should I Ask For


Guest flowermom6117

Recommended Posts

Guest flowermom6117

I will be taking my 4 yr old daughter to the G.I. doc for the first time soon. She is suspected of having celiac and her peds doc wants a biopsy done to confirm. I have read how a lot of the test come back negitive if the right ones are not run. I'm very new to all this no one in either side of our family has celiac. I would really like the right answer the first time.

Also, I beleave she may also have Lupus or R.A. because all of her symptoms are not explained by celiac alone. She has never been on a gluten free diet, I do not know if they will go away after she is. Should I have these test run now or should I wait to see what the results of a gluten free diet.

She has been ill fo a very long time and I really want answers for her sake. I plan to go gluten free even if the tests are negitive. She has already been diagnosed with being allergic to eggs, nuts, oats, wheat, peanuts, oranges, tomatoes, and bannanas.

How far do you push the doctors before you just give up and take matters into your own hads? And what are the best tests to ask for to get the correct results?

I thank everyone who answers my questions.


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



Celiac.com Sponsor (A8-M):



Guest flowermom6117

We were able to get into the G.I. doc the day he returned to his office. He ran all of her blood work and he biopsy is scheduled. Now we are playing the waiting game again.

spacemama Newbie

I don't know anything but that is great that you have things schedule. My younger sons GI keeps looking for worms. And we get no where. As for Lupus - I think that there are auto immune reactions from allot of stuff besides lupus. If you wanted to find out you could have the Lupus titters done. Has she has a positive ANA? I just went through this and it wasn't lupus.

Good luck and you may want to look at an elimination diet not just gluten free.

Tamara

Skylark Collaborator

You might be surprised how many different symptoms gluten can cause.

I might ask to get an ANA test on her to rule out a lot of autoimmune conditions because celiac doesn't usually cause ANA. I totally agree with starting her gluten-free as soon as the biopsy is done. Gluten intolerance/celiac can cause a broad range of symptoms, including joint pain.

Aly1 Contributor

I'm just curious what her symptoms are? As a previous poster said, there's hardly a system in the body that gluten can't touch...and with all her food allergies, it would hardly seem surprising to add gluten to the list.

Guest flowermom6117

Since the age of 13 months she has on multipul occasions run high fevers for days with no other symptoms (temps reaching 106 degrees), every time we took her to ER or doctor we were told she had a virus. She has had bleeding disorders. We were sent to a hemotaligist who found nothing. She is itchy all the time, has headaches, her jionts swell and hurt, she cannot walk for long periods, (she is very independent this is not for attention) she sleeps 12 to 15 hrs a night and is still tierd all the time, when she wears a bandaid her skin peals off with it, face breaks out in a rash when exposed to sun, is very pale with reding of the skin around the eyes.

As for known celiac symptoms she has stomach aches, gas, bloating, mood swings, cannot breath when exposed to flour, constipated most of the time, crys when she passes bowels, has days were she eats non stop, and now she is losing about a pound a week. She is almost five and wieghs in at 35lbs the last doctor appt. She was almost 41lbs 6 weeks ago. We are almost certain she has celiac, but I am concerned about the other symptoms. Her biopsy was scheduled very quickly after the doctor returned to town. She goes in this friday. As a mother I'm very nervous about the procedure, but am hopeful for results that make her life better.

Archived

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

  • 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. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      results from 13 day gluten challenge - does this mean I can't have celiac?

    2. - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      Insomnia help

    3. - SilkieFairy replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - Lkg5 replied to Matthias's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Unexpected gluten exposure risk from cultivated mushrooms

    5. - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      results from 13 day gluten challenge - does this mean I can't have celiac?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,353
    • Most Online (within 30 mins)
      7,748

    ace14219
    Newest Member
    ace14219
    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

    • catnapt
      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
    • cristiana
      Thank you for your post, @nanny marley It is interesting what you say about 'It's OK not to sleep'. Worrying about sleeping only makes it much harder to sleep.  One of my relatives is an insomniac and I am sure that is part of the problem.  Whereas I once had a neighbour who, if she couldn't sleep, would simply get up again, make a cup of tea, read, do a sudoku or some other small task, and then go back to bed when she felt sleepy again.  I can't think it did her any harm - she lived  well into her nineties. Last week I decided to try a Floradix Magnesium supplement which seems to be helping me to sleep better.  It is a liquid magnesium supplement, so easy to take.  It is gluten free (unlike the Floradix iron supplement).  Might be worth a try.        
    • SilkieFairy
      It could be a fructan intolerance? How do you do with dates?  https://www.dietvsdisease.org/sorry-your-gluten-sensitivity-is-actually-a-fructan-intolerance/
    • Lkg5
      Thank’s for addressing the issue of mushrooms.  I was under the impression that only wild mushrooms were gluten-free.  Have been avoiding cultivated mushrooms for years. Also, the issue of smoked food was informative.  In France last year, where there is hardly any prepared take-out food that is gluten-free, I tried smoked chicken.  Major mistake!
    • catnapt
      my IGG is 815 IGA 203  but tTG-Iga is   <0.4!!!!!!!!!!!!!   oh my god- 13 days of agony and the test is negative?  I don't even know what to do next. There zero doubt in my mind that I have an issue with wheat and probably more so with gluten as symptoms are dramatically worse the more gluten a product has   I am going to write up the history of my issues for the past few years and start a food/symptom diary to bring with me to the GI doctor in March.   I googled like crazy to try to find out what other things might cause these symptoms and the only thing that truly fits besides celiac is NCGS   but I guess there are some other things I maybe should be tested for ...? like SIBO?   I will continue to eliminate any foods that cause me distress (as I have been doing for the past couple of years) and try to keep a record. Can anyone recommend an app or some form or something that would simplify this? I have a very full and busy life and taking the time to write out each symptom name in full would be tedious and time consuming- some sort of page with columns to check off would be ideal. I am not at all tech savvy so that's not something I can make myself ... I'm hoping there's some thing out there that I can just download and print out   do I give up on testing for celiac with such a low number? I am 70 yrs old I have been almost completely off gluten for the most part for about 2 yrs. I had a meal of vital wheat gluten vegan roast,  rolls and stuffing made from home baked bread and an apple pie- and had the worst pain and gas and bloating and odd rumblings in my gut etc - almost went to the ER it was so bad. I was thinking, since I'm spilling a lot of calcium in my urine, that perhaps this was a kidney stone (never had one before but there's always that first time, right?)    Saw my endo on Jan 20th and after hearing the story about the symptoms from eating that holiday meal, she suggested doing a gluten challenge. She said 2 weeks was fine- she said stopping it in the middle if symptoms got bad was fine- In the meantime I'd read that 2 weeks was not enough- called and argued with the nurse about this, but ultimately decided to stop the gluten on the 13th day and get the test done because I was in too much pain and almost suicidal and knew I could not continue.   so.............. that's where I am now I have had no bread since Sunday. I did have some rolled oats today and had some gas and bloating afterwards I did have some wheat germ in a smoothie on Tuesday and had a stomach ache later that night.   but overall I feel so much better! all the joint pain is gone! the nausea is gone. The stomach pain and gas and bloating are going away. Still a bit gassy but no more of that horrible odor. wow, that would clear a room if I was out in public!  I see a GI nurse March 4th  I hope she'll be able to help sort this out! can you think of what my next steps might be?
×
×
  • 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.