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

Advice On Gluten Free Trial And Challenge....unsure About Symptoms

gorgemom

Recommended Posts

gorgemom Newbie
gorgemom
Posted

Hello,

 

My family and I recently decided to do a gluten free trial due to health problems in my children who tested negative for for celiac but have asthma, reflux and some other issues we are concerned about with an intolerance. I have a long history of bowel problems, joint pain etc, so it made sense for me to try it as well. I have not been tested!

So, we did the gluten free trial for one month during which time all of my bloatedness disappeared, I had regular bowels for the first time in forever and I just felt better mentally! 

My son's asthma symptoms seemed to improve and I actually took him off of his long acting inhaler a week ago with no problem.

 

This last weekend we decided to do a challenge and eat gluten to see if our symptoms came back. Within an hour of eating gluten on Friday, I had cramping and loose bowels. Of course we had fast food so I thought maybe, just maybe it was coincidence and it was the grease not the gluten. So Saturday I had more and by that evening I had a horrid headache! (Hadn't had one like that in the last 3 months or more). My stomach was still bothering me. My kids didn't really notice anything.

 

Then Sunday, I tried again, ate more gluten and my stomach was still bothering me, but but not horribly. 

We noticed Sunday night that our son was beginning to exhibit some shortness of breath after exercising so my husband and I decided we would go back on the gluten free diet Monday (today). 

 

That brings me to today. My stomach felt kind of swimmy this morning, I am dizzy and foggy. I ate lunch which was something I normally would eat, not gluten! And I am having horrible stomach aches now and some loose bowels. I am thinking that the gluten is doing a number on my system! Is it possible my stomach is still irritated from the gluten over the weekend? How long can this last? If I wasn't doing a gluten challenge I would think I had a stomach virus! These are stomach aches I have not had before! Any thoughts?

 

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

Celiac.com Sponsor (A8-M):


LauraTX Rising Star
LauraTX
Posted

Hi Goregemom, and welcome to the forum!  Generally, the point of a gluten challenge is to make a proper diagnosis possible.  Before you go back gluten-free, you may want to look into getting yourself tested.  Also, do you know what tests were ran on the kids?  The fact that the kids show improvement on a gluten-free diet means they may have Non Celiac Gluten Intolerance, but if they haven't seen a GI specialist, you may still want to take them to one.   Sometimes people eat healthier once they go gluten-free and the improvements are from that.  Either way, especially when kids and their school is involved, you are going to want to get an official recommendation from a doctor so you can have it documented. 

gorgemom Newbie
gorgemom
Posted
  • Author

My kids had a blood test done and they also both had intestinal biopsy's. As for me, there is no way I can eat gluten again! I have been miserable this weekend since putting gluten back in my diet. I guess it really isn't important to me to have a diagnosis if I know that I feel better when I take it out of my diet. I have a lot of other symptoms I am hoping will go away with the gluten free diet, hair loss, keratosis pilaris rash, chronic anemia, some vitamin deficiencies etc. 

I guess what I was wondering is if the intestinal reaction I had when trying gluten again after a month is typical of someone with a gluten intolerance or celiac? The only other possibility would be a stomach virus that just happened to start immediately after eating gluten and has lasted 3 days now. Has anyone else had this type of reaction? 

 

 

Hi Goregemom, and welcome to the forum!  Generally, the point of a gluten challenge is to make a proper diagnosis possible.  Before you go back gluten-free, you may want to look into getting yourself tested.  Also, do you know what tests were ran on the kids?  The fact that the kids show improvement on a gluten-free diet means they may have Non Celiac Gluten Intolerance, but if they haven't seen a GI specialist, you may still want to take them to one.   Sometimes people eat healthier once they go gluten-free and the improvements are from that.  Either way, especially when kids and their school is involved, you are going to want to get an official recommendation from a doctor so you can have it documented. 

Donna16 Newbie
Donna16
Posted

Hi Goregemom,

When I did a gluten challenge (for 4 weeks) after being gluten free for 6 months I became increadably ill  (many other symptoms besides intestinal)...worse than I ever was even before stopping the gluten from the beginning and once I stopped it again I felt really terrible for another week and a half and I am now slowly starting to feel better but its a daily challenge! So I would give it a little more time and see if you start to feel better again...hope this helps answer your question :) 

gorgemom Newbie
gorgemom
Posted
  • Author

Thanks for your reply Donna. It does help to hear your experience. I guess I don't understand why I would get so ill with just a little bit of gluten after being off of it for 4 weeks? I obviously was having problems to want to go gluten free in the first place, but they were more chronic issues, things i just dealt with. The stomach problems I have had the past few days after trying gluten again are way out of proportion! Like I said it feels like I have a stomach flu! 

 

As for my kids, there is a lot of history maybe I should explain, my son has dyspraxia and learning disabilities, asthma, reflux, skin rash among other things. My daughter also has dyspraxia, reflux and chronic constipation, skin rash. We are just so tired of all of the testing and trips to the doctor, my son has had egd's, bronchoscopy's, laryngoscopy's, ph probe, impedance probe, ekg's and on and on. They find damage in his lungs and lymphocytes in his esophagus but can't tell me how to help him!!!! My daughter has had an egd and ph probe, again they still can't make the reflux stop. So I started thinking there has to be another way than testing and trying medications! 

So, we decided to look at our diet. Both my sons pulmonologist and gastroenterologist as well as their pediatrician knows we are working on this. 

The fact that my son's asthma got better is HUGE! We tried taking him off of his steroid inhaler about 2 months ago and he got really bad. His asthma is considered severe persistent. 

Also, I homeschool both of my kids, so school diet is not a consideration. I just want my family to be healthy without pumping them full of chemicals. But I don't want to jump on a bandwagon either if that makes sense.

Thanks for listening and the input everyone!

 

Hi Goregemom,

When I did a gluten challenge (for 4 weeks) after being gluten free for 6 months I became increadably ill  (many other symptoms besides intestinal)...worse than I ever was even before stopping the gluten from the beginning and once I stopped it again I felt really terrible for another week and a half and I am now slowly starting to feel better but its a daily challenge! So I would give it a little more time and see if you start to feel better again...hope this helps answer your question :)

Donna16 Newbie
Donna16
Posted

Thanks for your reply Donna. It does help to hear your experience. I guess I don't understand why I would get so ill with just a little bit of gluten after being off of it for 4 weeks? I obviously was having problems to want to go gluten free in the first place, but they were more chronic issues, things i just dealt with. The stomach problems I have had the past few days after trying gluten again are way out of proportion! Like I said it feels like I have a stomach flu! 

 

As for my kids, there is a lot of history maybe I should explain, my son has dyspraxia and learning disabilities, asthma, reflux, skin rash among other things. My daughter also has dyspraxia, reflux and chronic constipation, skin rash. We are just so tired of all of the testing and trips to the doctor, my son has had egd's, bronchoscopy's, laryngoscopy's, ph probe, impedance probe, ekg's and on and on. They find damage in his lungs and lymphocytes in his esophagus but can't tell me how to help him!!!! My daughter has had an egd and ph probe, again they still can't make the reflux stop. So I started thinking there has to be another way than testing and trying medications! 

So, we decided to look at our diet. Both my sons pulmonologist and gastroenterologist as well as their pediatrician knows we are working on this. 

The fact that my son's asthma got better is HUGE! We tried taking him off of his steroid inhaler about 2 months ago and he got really bad. His asthma is considered severe persistent. 

Also, I homeschool both of my kids, so school diet is not a consideration. I just want my family to be healthy without pumping them full of chemicals. But I don't want to jump on a bandwagon either if that makes sense.

Thanks for listening and the input everyone!

I completely understand your feeling of just wanting to feel healthy!! I will give you some of my history as well...I was diagnosed with migraines at 7yrs, allergies to dust, and I would always catch everything (weak immune system i think). Then at 12 I got chronic juvenille arthritis, they put me on anti-infamatories which landed me in the hospital with internal bleeding. At about 16 I started having major pains under my right rib (countless runs to doctors with no answers, took about 8 yrs for them to do an ultrasound and discover that I have gallstones) At about 18 I started having stomach/intestinal issues... bouts of diarrhea and constipation was seen on several occasions by different gastrointerologists who basically told me I have an anxious stomach and IBS... The last 2 years my digestion problems got really bad, including bad reflux (food stuck in my throat for hrs) and I would start going numb down my whole left side (face to feet). I also have red swelling around all my fingers and toes, and had extremely itchy lower legs, and broke out in hives a few times. Went to the ER on several occasions as this would lead me to a feeling of lost balance, inability to focus, heart palpitations ect... I felt like I was dying! Ive done soooo many tests and all have come back negative ... When I went Gluten/Dairy free last summer plus taking supplements I started to feel better within 2 weeks but then I started having some issues return. This is when I went back to my GP who made me do the gluten challenge. It destroyed me and when I told him how bad the neurological issues were when returning to Gluten he basically said that it had nothing to do with the gluten and wanted to put me on antidepressants! Urggg!!!!! Anyways, so I stuck to the gluten challenge for another few weeks and it was a huge mistake on my part. like I said I am still suffering on a daily basis because of it but I do feel like Im getting slightly better with each day... I started seeing a chiropracor which is helping alot as well!! I really believe that if you stick to this you and your children will begin to feel better!! Have you tried Diary free as well?? I cannot tolerate dairy either! 

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. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      High TTG-IgG and Normal TTG-IgA

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing...
    2. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    3. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    4. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    5. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,872
    • Most Online (within 30 mins)
      7,748
    Koyanna
    Newest Member
    Koyanna
    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)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
×
×
  • 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.