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

Ok Need Help Again With Symptoms

Melmelsmom

By Melmelsmom
in Coping with Celiac Disease

Recommended Posts

Melmelsmom Rookie
Melmelsmom
Posted

Hello again and thanks to all who have helped me out over the past few days as I am new around here and have had many questions in regards to my daughter who has been on a gluten free diet for almost 2 motnhs now well 7 weeks.

Anyhow I was just wondering what others have experienced as far as symptoms.

I ask this because my daughter even with the gluten free diet seems to have a constant state of nausea sometimes so bad she is in tears and wont eat at all because of how terrible she feels.

Also she has been getting this really wierd rash mostly on the front of her body in the stomach and chest area and it sometimes goes onto the back and down to her bum....the rash is odd because it is not raised or anything but really red and patchy almost an orangish red. This rash was happening before the Gluten free diet as well but it is still here.

Just wondering if any of you have had these types of symptoms with Celiac?

I took my daughter back to the pedi GI specialist at Childrens hospital yesterday and he wants to start doing some other test on her for other things that I guess some Celieac can have along with Celiac.

So any thoughts or words on what others have experienced would be very helpful.

Also I guess I am off to the DR to get tested for this as her Dr said it would be wise for us to all get tested sincce this can be a genetic thing....so for others another question I have is how many in your family have this.

I do feel after reading all the symptoms of Celiac that I very well could have it and be the one who has given it to my daughter.

Symptoms I have:

Stoamch pain very often

back and forth constipation and the other you know the big "D" (this one is horrible because I always worry on a road trip and avoid eating because I am afraid I will have to stop and use many restrooms along the way and it is no fun when you have the big "D" to be sitting in Burger King bathroom with horrible cramps that make you feel like you are going to pass out!

Also another thing that happened to me in 2005 was I got very aniemic with a hemoglobian of 4.9 and ended up in the Hospital in Urgent care for 6 days during which time I was given 7 blood transfusions and 3 iron transfusions

So all in all I have had many things that are on the list for Celiac and although I realize that this does not mean for sure that I have it I can say that I would be surprised at this point if my tests come back negative.

I try to look at it in a positive light though that if this is what my problem is then at least I will finally have a way to feel better and not have to worry about episodes while I am out in public.

Ok well I look forward to getting some response and more help.

Thank you all for your kindness.

Blessings,

Melmelsmom

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

Celiac.com Sponsor (A8-M):


Guest thatchickali
Guest thatchickali
Posted

The rash sounds like DH, which I don't have but I'm sure there will be people to tell you about it.

I still have nausea, I feel like her too, don't want to eat in fear of getting sick.

I'm seeing a dietitian tomorrow, and my doctor thinks I should start considering other food intolerances as well. Today I've been gluten free 2 months... no better, almost worse now....

I would also recommend you get tested (sounds like you are planning on it). Even if you're not completely ill everyday, you could have it and be doing damage you can't feel to your insides.

I don't know if you have looked into cross contamination by cooking with the same utensils as you use for gluten containing food but that could be keeping her sick.... Especially things like cutting boards, and nonstick pans.

texasgal Newbie
texasgal
Posted

"Anyhow I was just wondering what others have experienced as far as symptoms."

I have the nausea quite often. My symptoms after being glutened and withdrawals from gluten include body aches, severe headaches, stomach swells, stomach pain - both sharp stabbing pains and dull aches, brain fog, no energy, occasional unexplained rash, moodiness (to be expected) after all, I do feel bad :rolleyes:

I've been on this diet for almost a year. Was sick for the last 4 days from being cross contaminated, so be careful. I never thought I was that sensitive to gluten but I am. The one thing I think we all share as far as symptoms - is that we get really tired of feeling bad - look out for depression :(

You're doing great and you have the good sense to ask questions and check out what others are writing. Good luck :)

gfgypsyqueen Enthusiast
gfgypsyqueen
Posted

You might want to ask about having the rash biopsied. That will decide if it is DH or not. I have been unable to get an oficial diagnosis for my youngest, but she is better and has no rash on the gluten-free diet. Accidental gluten and the rash comes right back.

The nausea comes and goes. Find her comfort food. For me it is plain rice or rice and soy sauce. Alwyas makes me feel better. Too much juice, acid, soda, etc might be really irritating to her system while she is healing too. Too my grease makes me sick to my stomach too.

Like someone else mentioned check for cross contamination problems. Check for hidden glutens. Check all of her bath products, lotions, and cosmetics for gluten.

BettyL. Rookie
BettyL.
Posted

Check out any medicines she is taking. I started to develop a similar rash last fall. After a food dairy, etc I found nothing to explain it. I discover It was the blood pressure medicine I was taking. Change of medicine and rash has disappear.

Melmelsmom Rookie
Melmelsmom
Posted
  • Author

Thank you all for your replies.

I can answer a few of the questions tha were asked.

I know someone said something about medicines she is taking. She takes none at this tme so that one is an easy one.

As far as making sure she does not get cross glutened.

I had thought we were doing ok because when we found out I did enough research to tell me along the way that if the entire house was not going to be gluten free then she needed seperate things like mayo, pb, jelly, butter. So we have done all those things as well as we threw out all our cook ware and cutting boards that were made of wood as well as our post and pans that were non stick and got all stainless steel items, we also bought her an entire set of tupperware that belongs to her and her alone and only gluten free items are stored in it. We got her a set of baking ware like cake pans cookie sheets etc that are non stick but they stay in her cabinet that we have set aside to make sure none of her stuff comes in contact with something that may be harmful to her.

We also have a large shelf in our pantry now that is strictly for gluten free food items and nothing else is allowed on this shelf.

So I guess my next question is am I doing enough? Is there anything else I should be doing?

Oh and to answer another quick question about hair products and makeup.

She does not wear make up yet but does use lotion so I have checked that and I have checked her Shampoo and conditioner as well as her toothe paste.

You know as I type this something just dawned on me and that is that my daughter has had orthodontic treatment and she is now wearing a retainer and also has some brakets on her back upper molars that have been sealed on her teeth with some sort of selant glue...HMMM do any of you think that maybe this glue has some sort of gluten in it that may be giving her constant contact with it? Or do you think maybe the retainer is made with ingredients that contain gluten???

What do you all think? I had never thought of that!

Do you think I should call her orthodontist and find out what is in these items?

Ok well once agian I thank you all fo ryour help and look forward to your responses in regards to my reply.

Blessings,

Melmelsmom

BettyL. Rookie
BettyL.
Posted
You know as I type this something just dawned on me and that is that my daughter has had orthodontic treatment and she is now wearing a retainer and also has some brakets on her back upper molars that have been sealed on her teeth with some sort of selant glue...HMMM do any of you think that maybe this glue has some sort of gluten in it that may be giving her constant contact with it? Or do you think maybe the retainer is made with ingredients that contain gluten???

What do you all think? I had never thought of that!

Do you think I should call her orthodontist and find out what is in these items?

Ok well once agian I thank you all fo ryour help and look forward to your responses in regards to my reply.

Blessings,

Melmelsmom

It is possible, check it out.

Betty L.

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

Celiac.com Sponsor (A8-M):


confused Community Regular
confused
Posted

I would call the orthodotntist, that could be it.

Does she go to school, if so does she use products that have gluten like chalk, play do, bubbles and the suck that contain gluten. Does she ever trade her lunches.

paula

gfpaperdoll Rookie
gfpaperdoll
Posted

The cleaner that the dentist uses to polish your teeth are not gluten free.

Also, I suspect that your daughter has other food allergies. Is she diary free? I would start with dairy, soy & egg suspects...

also are you cooking with wheat (regular flour) flour in your house? or mixes containing flour??? if yes, you need to take that flour canister out to the trash...

gfpaperdoll Rookie
gfpaperdoll
Posted

Forgot to say that I would cut out all Gluten Free grains - things like cereal, crackers, waffles that kind of stuff - all those grains/manufactured products have a certain level of cross contamination. Some people cannot tolerate them - me for one...

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 Sarah Grace's topic in Related Issues & Disorders
      25

      Headaches / Migraines and Hypoglycaemia

      Excessive dietary tyrosine can cause problems. Everything in moderation. Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese. Sulfites cause a high histamine release. High histamine levels are found in migraine. Following a low histamine diet like the low histamine Autoimmune Protocol diet,...
    2. trents
      - trents replied to Sarah Grace's topic in Related Issues & Disorders
      25

      Headaches / Migraines and Hypoglycaemia

      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit.
    3. Scott Adams
      - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."
    4. Scott Adams
      - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience

      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress...
    5. Scott Adams
      - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      2

      Heat intolerant... Yikes

      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium. Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,151
    • Most Online (within 30 mins)
      7,748
    Travis25
    Newest Member
    Travis25
    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

    • knitty kitty
      Headaches / Migraines and Hypoglycaemia

      By knitty kitty · Posted

      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      KAN-101 Treatment for Coeliac Disease

      By Scott Adams · Posted

      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Body dysmorphia experience

      By Scott Adams · Posted

      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
    • Scott Adams
      Heat intolerant... Yikes

      By Scott Adams · Posted

      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
×
×
  • 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.