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

Sad...this Gluten Challenge Is Going To Be Rough :(

carecare

Recommended Posts

carecare Enthusiast
carecare
Posted

Doing the gluten challenge until their endoscopies on December 16th even though the dr said to start gluten 4-6 wks before. I just felt it should be longer (from what I've read so many people saying on the forums). Day one was yesterday (we've been gluten free since the beginning of August). Both boys ages almost 10 and 12 woke up feeling "yucky" and slept longer than they normally would. Almost 12 yr old came downstairs moaning as his muscles are already hurting. 10 yr old said last night after his crackers he felt awful...and after his gluten toast and eggs this morning he said his stomach was hurting. I'm so sad that I feel the need to put them through this...but I just think they should know for sure if it's celiac because they won't feel the need to cheat as they get older...they'll know for their own families as well. I'm sitting here holding back tears that I am making them feel so awful. My almost 12 yr old said "oh this is horrible, now I know for sure what it's going to feel like to eat gluten, I hurt in every muscle of my body."...off to go cry now...then pick myself up and get him some motrin. :(

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

Celiac.com Sponsor (A8-M):


pricklypear1971 Community Regular
pricklypear1971
Posted

I'm so sorry. I know your pain is 3x - yours and each one of theirs.

HGL Newbie
HGL
Posted

Carecare,

I am so sorry for your families pain right now. As a brand new mom to this I am wondering if you've done the genetic testing for it? Our ND recommended it but said its more of a comfort thing for us.

HGL

carecare Enthusiast
carecare
Posted
  • Author

Thank you both. I know I hurt for them more than they probably hurt themselves. Tough being a Mamma.

I asked the dr about genetic testing. Wasn't too keen on his response. He said "Well, in your case with your family history I am certain you would come up with the gene for celiac." So he didn't see a point in testing for the gene because it's not going to tell us if they have celiac or not. Really is hard to see the rationalization behind a biopsy being the "gold standard" for saying "yes, you have celiac." ...when diet and blood shows there is a problem with gluten in your body.

Now I'm second guessing my starting them on a diet so early? I did more reading and I'm coming up with lots of different time frames. from 4-6 wks...to 4-8 wks...but one did say no longer than 12 wks especially in children. Come the time for their endoscopy will be 11 1/2 wks. Maybe I don't have to challenge them so long after all. Maybe starting in a month would still be ok? hmmm....

kareng Grand Master
kareng
Posted

Univ of chicago Celiac Ct does free blood testin every Oct. On the postcard they sent me, it said you must be eating a regular gluten diet for 3 months.

Skylark Collaborator
Skylark
Posted

Sorry the kiddos are feeling so punk. :( Research shows you won't reliably get a relapse unless you eat gluten for 3 months so you're doing the right thing. You don't want to challenge too short, then wonder if the biopsy was right if it's negative.

Genetic testing is not diagnostic at all. About 30% of the US population carries a "celiac" gene, but only 1% are celiac. If the blood tests weren't convincing, the only option to be certain about celiac vs. gluten intolerance is the biopsy.

M0Mto3 Rookie
M0Mto3
Posted

Sorry that you and your kids are going through this. I have my 15 month old on a gluten challenge and she has been miserable. She had 6 loose bms the day after she started and then was just crabby. Now, 6 weeks into it she just started having 3 loose, pale, bms a day. I am counting the days until her GI appt.

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

Celiac.com Sponsor (A8-M):


carecare Enthusiast
carecare
Posted
  • Author

Thanks skylark and momto3. Yes...this is definitely going to be a long 2 1/2 mnths if we make it that far. :( My son who has the most problems with gluten as far as we can tell...the muscle pain said his muscle pain yesterday was even worse than the day before. Then last night he was hunched over in pain. I wasn't sure what was going on...as we were in the car and his brother said "something is wrong with E." He couldn't even speak...in the end it ended up as gas pain...which I don't ever recall happening to him before. Poor kid. Interesting is my other son who initially got stomach pain and nausea from this gluten trial seems ok. He's not complaining of any more pain. So hopefully it's not so bad for him. Older son though...this muscle pain stuff is torture for him! :(

Yeah, the only reason I questioned the dr about genetic tests was really so that certain family members might get a clue that maybe they too have a problem...and was hoping if we showed them there was a genetic link then they'd make the changes to save their own health. It's sad to see people you love suffer such ill health when they could possibly figure out the reason with just eliminating one thing...yet they never give it a try. I guess it's also why I want confirmation with these endoscopies. Even if it comes down to a negative result I know absolutely for sure gluten harms my boys...especially the older one. He knows it himself.

T.H. Community Regular
T.H.
Posted

You might want to call the doctor up and talk to them about these reactions, or at least find out a way they can help you monitor them closely, if a couple days is causing this much pain.

Most doctors seem to assume any problems on a gluten challenge are going to be gut related, and not too severe. For many of us, after going gluten free, our reactions increase, and sometimes it can be to the point where it can become a more serious issue.

There's also been some recent discussion of gluten challenges that might be worth investigating, if your little ones are having this much trouble. This one article mentions a couple of studies re: the issue:

Open Original Shared Link

Best wishes, and good luck! One of our children is celiac, but the other tested negative through blood work, but felt better off of gluten. We really struggled with the idea of a gluten challenge for him, too. It would be so much easier if it was a clear cut, easy answer, yeah? :-(

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 lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Son's legs shaking

      @lizzie42, You're being a good mom, seeking answers for your son. Cheers! Subclinical thiamine deficiency commonly occurs with anemia. An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal. Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps...
    2. Scott Adams
      - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this...
    3. knitty kitty
      - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease. Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease. Though having the genes for Celiac...
    4. trents
      - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining...
    5. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,868
    • Most Online (within 30 mins)
      7,748
    LMGarrison
    Newest Member
    LMGarrison
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Bob red mill gluten free oats

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      High TTG-IgG and Normal TTG-IgA

      By knitty kitty · Posted

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
×
×
  • 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.