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

I Immediately Think Every Symptom Is Caused From Gluten...


Happyw5

Recommended Posts

Happyw5 Explorer

I have been gluten free for about two years, and it has made a dramatic change in my life. (I won't get into all the symptoms and issues I had) I have five kids and they each have there own set of issues and I believe that most of their symptoms stem from gluten intolerance as well. I also have brothers and sisters that I believe have issues. I was never diagnosed celiac, so I think that is why I never completely take my kids off gluten. Our home is gluten free, but they eat lunches at school and so on. Does anyone else feel like they jump to gluten being the cause of symptoms?

My son came home from basketball practice tonight (12yrs) and said he could hardly run, because his body and head hurt so bad. He has many stomach issues that come and go and is sent home from school often for headaches. He does have many other unrelated issues, like a kp rash on his arms and face (but maybe they are all related) Dr's don't seem to worry, because he is overall a healthy child! My other son won't eat for days at a time because he feels like something is stuck in his throat (had throat study done and came back fine) My girls all have different issues as well.

Just thought I would see if anyone else has become obsessed with gluten symptoms?


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



Celiac.com Sponsor (A8-M):



nvsmom Community Regular

I don't think I became obsessed... I saw the symptoms more often in people but I could be right. Right?

I saw GI symptoms in 2/3 of my kids. I made them gluten-free and those symptoms have largely improved. I think the only way to know if your kids are celiac is to test them, and likewise the only way to know if they are non-celiac gluten interant is to follow the gluten-free diet strictly. Perhaps give it a try and you'll be able to stop wondering. :)

Best wishes to you and your five.

Cara in Boston Enthusiast

I have one son with celiac and one without. My celiac son complained for a YEAR of not feeling well (fatigue, joint pain, etc.) and I assumed it was from gluten - somewhere in our gluten-free house. We restricted his diet even more (no processed foods that were not specifically gluten-free), no eating out, etc. etc. I was at the point were I was going to hire someone to come in to my kitchen and find the elusive gluten. Turns out he had lyme disease. Now I know better than to just assume it is the gluten.

My poor older son, I am constantly asking about his bathroom habits. He still gets tested every two years, but sometimes I feel we need to go in sooner. Mood swings, headaches, fatigue, etc. All PERFECTLY NORMAL for a 10 year old . . . but I still wonder.

Cara

roomorganizing Rookie

I totally understand how you could relate every symptom to gluten! After reading hundreds of posts and stories on this forum as well as dozens and dozens of medical articles, I have come to understand that celiac disease can be the ROOT of so many other conditions and symptoms. And it can be so frustrating when most doctors want to treat superficially and only what they see on the surface. We were fortunate with our oldest son -- our primary care physician was in the early stages of TRULY learning about celiac when I took our 16-yr-old for his physical. He was 5'3", in the 10th percentile of his peers, was not growing, had delayed puberty, but no other symptoms (that we recognized at the time). My concern was the short stature (pituitary? thyroid? just the card he was dealt?). Our doc wanted to run blood work, but emphasized that he was ordering a celiac panel. Tests showed tTg of 70 (<20 negative), so endoscopy was ordered. The GI doc said visually everything looked normal -- but the biopsies came back positive. We immediately went gluten-free with him and he grew over 7 inches in less than two years!

In the last two weeks, our daughter has presented with itchy blisters on her legs that broke open, got progressively larger and more angry looking, and now look like open sores. Of course, our new doc (we moved last summer), says it may be impetigo. I insisted that she be tested for DH, but he wanted to give it a week of treatment and go from there. I said I didn't want to wait a week. So we are moving ahead with the antibiotics in case they are infected, and I take her back in in a few days for the skin biopsy. Personally, with our family history, I prefer to rule out celiac before we run the gamut of every other condition it COULD BE! He was not as convinced, obviously, but reluctantly agreed to what I wanted.

That's a long story just to say "go with your gut!" Even with just a little bit of research on celiac disease, it's hard to not to see every symptom as related. I share your obsession Happy!

Happyw5 Explorer

I am taking my oldest son to his dr tomorrow. I am going to have them run a cbc and a celliac panel. He comes home constantly with headaches and bellyaches. He is constantly in the bathroom, and says its normal bm, but i no it's not... He also has had little bumps on his arms and face for the longest time. It may be nothing but I need to know!!!

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. - trents replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Fiber Supplement

    2. - Trish G posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Fiber Supplement

    3. - kpf replied to kpf's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      ttg iga high (646 mg/dl) other results are normal

    4. - knitty kitty replied to Rejoicephd's topic in Related Issues & Disorders
      4

      Basic metabolic panel results - more flags


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,333
    • Most Online (within 30 mins)
      7,748

    jlcvt
    Newest Member
    jlcvt
    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
      Welcome to the forum, @Trish G! "Gluten free" does not necessarily equate to "no gluten". According to FDA standards it actually means that a food product contains no more than 20ppm of gluten. This is safe for most celiacs but would not be for those who are on the more sensitive end of the spectrum. So, it would depend on the individual celiac and their level of sensitivity to minor amounts of gluten. That's the long and nuanced answer. The short answer is that it is a product derived from wheat and so you can be certain it will contain some residual amounts of gluten. No gluten removal process is 100% effective. So, to be absolutely certain, stay away from it. Have you tried chia seeds? Very high in fiber and quickly turns into a gel when added to water. Make sure you get seeds that are gluten free if you decide to try it.
    • Trish G
      I was taking Benefiber for my IBS-C before my celiac diagnosis. It does say Gluten Free but lists Wheat Dextrin on the label. I really dont like psyllium fiber, so is there anything else I can take or is the Benefiber really ok for someone with Celiac disease?  Thanks!!!
    • kpf
      Abdominal pain and an itchy stomach were the symptoms I asked to see a GI about. Now I’ve learned these other symptoms—that I have but attributed to other issues—could also be related to celiac disease:  fatigue joint pain canker sores numbness or tingling in hands or feet difficulty with coordination anemia headaches neutropenia I never dreamed in a million years she would consider celiac disease. It was a shock to me. It’s definitely not what I went to her for. 
    • knitty kitty
      @Rejoicephd, I'm not a doctor, but I experienced severe thiamine deficiency.  Your symptoms seem really familiar.  Malabsorption is a real thing that happens with Celiac.  A multivitamin is not going to prevent nor correct nutritional deficiencies.    Doctors do not recognize nutritional deficiency symptoms.  Gastrointestinal Beriberi is not recognized often.  Caused by thiamine deficiency, high dose thiamine supplements or IV administration with other vitamins, minerals and glucose under doctor's care is needed.   Thiamine deficiency is found in anemia.  Thiamine deficiency in the kidneys can result in electrolyte imbalances and cloudy urine.  Thiamine deficiency can cause high blood sugar which can cause cloudy urine.  Dehydration can cause cloudy urine.   I'm linking some PubMed articles.  You see if your symptoms match.  Discuss the possibility of Gastrointestinal Beriberi with one of your specialists soon!  Just to rule it out.  I'm very concerned.   I'm linking some PubMed articles.  You see if your symptoms match.   Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/#ref3 From Section 3: "In conclusion, TD limited to the gastrointestinal system may be an overlooked and underdiagnosed cause of the increasingly common gastrointestinal disorders encountered in modern medical settings. Left unattended, it may progress to wet or dry beriberi, most often observed as Wernicke encephalopathy.". . And... Refeeding Syndrome https://www.ncbi.nlm.nih.gov/books/NBK564513/
    • trents
      What are your symptoms? What has brought you to the point where you sought celiac disease testing?
×
×
  • 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.