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

Gluten Challenge

M0Mto3

Recommended Posts

M0Mto3 Rookie
M0Mto3
Posted

So, my 15 month old daughter is on a gluten challenge at the moment. Her general story is that she started out at the 50th% for weight and maintained that until her 4 month visit. By 10 months she was down to the 5th% in weight (height was 50th% is now 30th%). I got my ped to test for Celiac's at that time. She only checked ttg levels and they were fine. I had done my homework and knew that this wasn't likely to be positive in a 10 month old, so ped thought it would be good to refer to GI. At this point we started gluten-free and she was a different baby within 4 days. She no longer had 4 bms a day, she didn't have circles under her eyes anymore, her face looked fuller, and she went from barely crawling on her belly 2 feet to pulling to stand and crawling all over.

So, for 3 months (until her GI appt) she was gluten-free. The GI doc suggested we put her back on gluten and take her off dairy/soy. Basically he felt that dairy/soy was more likely the issue. She was 13 months at the time and he said he has never diagnosed Celiac's under 16 months. He didn't want to give her that lifetime of restriction without an official diagnosis. So, after a long talk with my ped (who is wonderful and was supportive either way) and thinking long and hard, we decided to go through with the gluten challenge.

She started gluten about 4 weeks ago. She had 6 bms the day after she started, then her bms were normal (1-2/day). She has been super crabby, though. Well, about 4 days ago she started having more frequent, loose, pale colored stools. She has horrible diaper rash and is waking up a lot earlier than normal for her. I think we have officially reached a point of intestinal destruction that is causing her symptoms.

I am struggling with continuing. I know at this point I want to go through with the testing. I just need some moral support from moms that put their little ones through the gluten challenge. I want to know that in the end it is worth it. Help!

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

Celiac.com Sponsor (A8-M):


M0Mto3 Rookie
M0Mto3
Posted
  • Author

No one???

beebs Enthusiast
beebs
Posted

Hi there,

I haven't had to put my kids on a challenge yet - they are both gluten free and doing heaps better without an official diagnosis. I have thought about it...and I might do it - but I'm not sure. One of the things that makes me think about not doing it is the high false negative rates in kids even when consuming gluten! To be honest I had a nightmare time with the two before going gluten free, I am celiac as is my mother - I know its celiac for them as well. It a hard one. I'm still a bit in the do I don't I. My youngest vomitted every day of his life until he went gluten free in January - he just came off reflux meds and no vomit in sight - so I am thinking its gluten. He had a borderline biopsy and he had gastritis dundeonitis, esophageal ulcers etc just gross and he was so ill. My eldest who was 3 when he got sick became so severely anemic that he couldn't breathe properly and he developed a heart murmur from it. He couldn't stand up without falling over - just awful....I would like a diag though - people never take it seriously anyway - its even worse when they aren't diagnosed! Arrghhh

Do you think that she will physically be able to handle the challenge?

SOrry - not much help - just wanted to let you know that there are other parents out there in this difficult position!!

M0Mto3 Rookie
M0Mto3
Posted
  • Author

Thanks for your response. Well, she goes back to GI in less than 2 weeks. He only made us do a 2 month challenge and I cheated and didn't start right away. She had a good day today, so maybe we can hang in there. She has shown symptoms her whole life, but I don't think she got as sick as most kids get prior to getting diagnosed. Her biggest symptoms were FTT and developmental delay.

There is no celiac's in the family, but my husband has type 1 diabetes. So, chances are, she carries the gene.

Roda Rising Star
Roda
Posted

My youngest son was five when his IgA tTg came back just one number over to be positive. I put him gluten free immediatly. After about a month my husband regretted not dong the scope/biopsy. I continued him gluten free for a total of 4 1/2 months and decided to do a gluten challenge. His lasted only three days since there was obvious reactions, and by the third day his daddy said enough. He was content that the blood test and his reaction to giving him gluten was definate proof for him that he had celiac. He will be coming up on his 1 year gluten free anniversary in November. My oldest one(he is 101/2) I have toyed going gluten free with him for the past two years. Every test he has had for celiac in that time frame was negative. We finaly came to the decision to have him see a GI to have him scoped. It was negative also. He has been gluten free since about a month now and will be strictly gluten free until Christmas break. I have noticed improvements in him already. He has gained two pounds, he is more pink and is having regular BM's. I will do a gluten challenge in Dec. and see what happens. I have a suspicion that he will end up gluten free permanantly.

salexander421 Enthusiast
salexander421
Posted

Hopefully you will get the answers you need! We did a gluten challenge with both of our girls. I know at the time we felt we were doing the right thing but now, looking back, I regret it. I would probably feel it was worth while if we had gotten definitive answers but we didn't. There's still a big question mark in my head. I'm not trying to discourage you but do want you to know that in the end there may not be any definitive answers and at that point you just have to stick with your gut feeling. Our 3 1/2 year old tested negative after a 3 month gluten challenge but tested positive for the genetic test, she has really bad symptoms from gluten. The doctor did not want to do a scope since we don't have any "known" celiac in the family (though I do have my suspicions). Our 2 year old went through a gluten challenge at the same time (did not plan on it, it just happened that way). It was a miserable experience and she had obvious signs from the gluten. After going through all that the GI didn't feel it was necessary to test her since her sister tested negative and there was no known history in the family. At that point I was just ready for my girls to be healthy again. I immediately put them back on gluten free diet and within just a few days saw HUGE improvements. There have been a couple slip ups since then and both times our 2 year old broke out in a nasty itchy blistery rash on her bottom that looks just like dermatitis hepertiformis. It is hard sometimes not having a diagnosis but I just have to remind myself how miserable those 3 months were and that keeps me going.

Anyways, I hope you get the answers you're looking for but if you don't just trust your instincts. In the end you know what is good for your child!

M0Mto3 Rookie
M0Mto3
Posted
  • Author

salexander...That is exactly what I was afraid of. I was just telling my mom that yesterday. It feels so awful to be putting her through this, when I know gluten is an issue for her. I know that even if she comes back with a negative blood panel I will still take her back off of gluten. I really want to keep going in the hopes of getting the positive result and eliminating any questions that I have (or that she may have over the years). She sees her ped tomorrow and I am hoping to get her opinion on this whole thing. I am also anxiously awaiting her weigh in. For anyone who has dealt with FTT in their infant that the weight issue is such a huge stressor. Now that she is back on gluten I am sure her weight gain will not be up to what it should be.

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

Celiac.com Sponsor (A8-M):


M0Mto3 Rookie
M0Mto3
Posted
  • Author

Update after Ped appt: Weight % is now down to the 3rd%, lowest she has ever been. Ped is 100% convinced it is gluten and has already offered to refer elsewhere if we don't get the answers we need from the GI doc she is currently seeing. I told her it probably wouldn't matter because I am taking her back off gluten regardless of the test result.

Now, just 1 more week until GI appt.

salexander421 Enthusiast
salexander421
Posted

That's great that your ped is on board with you! Hopefully you will get the answers you need from the test, but if you don't at least you know 100%, from doing the gluten challenge, that gluten is a problem for her. Glad that you are willing to trust your own instincts and take her off gluten either way! If the test is negative I would suggest asking the GI if they can do a genetic test as well. That is what I did with our oldest. She tested negative but her genetic test was positive. I feel like I'm doing the right thing by keeping her gluten free since she obviously reacts to it and her genetic makeup says she could develop celiac at any time in her life so that's enough motivation for me to keep her 100% off of it. Look forward to hearing about your GI appt!

Archived

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

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


  • Member Statistics

    • Total Members
      132,143
    • Most Online (within 30 mins)
      7,748
    Tracy Williams
    Newest Member
    Tracy Williams
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      My migraines generally have their onset during the early morning hours as well. Presently, I am under siege with them, having headaches all but two days so far this month. I have looked at all the things reported to be common triggers (foods, sleep patterns, weather patterns, stress, etc.). Every time I think I start to see a pattern it proves not to pan out in the long run. I'm not sure it's any one thing but may, instead, be a combination of things that coalesce at certain times. It's very frustrating. The medication (sumatriptan or "Imatrix") is effective and is the only thing that will quell the pain. NSAIDs, Tylenol, even hydrocodone doesn't touch it. But they only give you 9 does of sumatriptan a month. And it doesn't help that medical science doesn't really know what causes migraines. They know some things about it but the root cause is still a mystery.
    • Scott Adams
      Tamale ingredients

      By Scott Adams · Posted

      These are labeled gluten-free: https://www.amazon.com/Corn-Husks-Tamales-Authentic-Flavorful/dp/B01MDSHUTM/
    • Wheatwacked
      GI DX celiac despite neg serology and no biopsy

      By Wheatwacked · Posted

      Just a gluten free diet is not enough.  Now you have to identify and replenish your malnutrition.  Celiac disease is co-morbid with malabsorption syndrome.  Low vitamin D, Low Thiamine caused Gastointeston Beriberi, low choline, low iodine are common the general population, and in newly diagnosed Celiacs in the western culture its is more likely.  It takes time to heal and you need to focus on vitamins and minerals.  Gluten free foods are not fortified like regular processed foods.  
    • Sarah Grace
      Headaches / Migraines and Hypoglycaemia

      By Sarah Grace · Posted

      Dear Kitty Since March I have been following your recommendations regarding vitamins to assist with various issues that I have been experiencing.  To recap, I am aged 68 and was late diagnosed with Celiac about 12 years ago.  I had been experiencing terrible early morning headaches which I had self diagnosed as hypoglycaemia.  I also mentioned that I had issues with insomnia, vertigo and brain fog.   It's now one year since I started on the Benfotiamine 600 mg/day.  I am still experiencing the hypoglycaemia and it's not really possible to say for sure whether the Benfotiamine is helpful.  In March this year, I added B-Complex Thiamine Hydrochloride and Magnesium L-Threonate on a daily basis, and I am now confident to report that the insomnia and vertigo and brain fog have all improved!!  So, very many thanks for your very helpful advice. I am now less confident that the early morning headaches are caused by hypoglycaemia, as even foods with a zero a GI rating (cheese, nuts, etc) can cause really server headaches, which sometimes require migraine medication in order to get rid off.  If you are able to suggest any other treatment I would definitely give it a try, as these headaches are a terrible burden.  Doctors in the UK have very limited knowledge concerning dietary issues, and I do not know how to get reliable advice from them. Best regards,
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
×
×
  • 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.