Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 Celiac.com!
    eNewsletter
    Donate

Please Read: Can Someone Help?


Mern27

Recommended Posts

Mern27 Newbie

I am new here and see that there is a lot of informative people on here so I'd like to ask some opinions on my 5 year old daughter's health. Since she was born, she was always very gassy and had very loose stools. When she was 3, she began to complain of tummy aches (pointing more towards the belly button area). When she was 4 we noticed blood in her stool so we took her in for allergy testing and it showed very significant milk allergy and mild egg allergy. That was about 8 months ago. We have taken her off all milk proteins and there is some improvement, but now she complains of tummy ache (higher up now) when she eats. Her stools now seem to be very pale...kind of grayish. Her skin is very pale, dark undereye circles and quite skinny. The doctor said she tested negative for wheat allergy in which he put in the same category as Celiac disease when he was talking. Is there another test that can be done besides just normal allergy bloodwork? Does this sound like possible Celiac? I feel like the doctor did not do the Celiac testing...isn't the wheat allergy test different?

I would appreciate any input!

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



happygirl Collaborator

Hi Mern,

I'm sure others will pop in with more ideas, but I wanted to welcome you to the board.

Yes, wheat allergy testing is different than Celiac.

Request that your doctor run the full Celiac blood panel, or find a doctor that will.

The panel includes: (from Open Original Shared Link

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

Best of luck, and I hope you find answers for your daughter.

Link to comment
Share on other sites
akflboyd Rookie

Does she eat a lot of soy products? I have had my daughter on the Gluten-free Casein-free diet but was giving her soy yogurt. She kept complaining about her stomach hurting too. She is no longer eating the soy yogurt and we have not had any problems.

You have come to the right place! I am new to all this too so I don't dare act like I know much. Everything I have learned has been from people on this website. I cannot tell you how supportive and helpful it has been for me. I think the parents know more here on the website than any doctor.

Good luck and I hope you find the information you are looking for!

Kathleen

Link to comment
Share on other sites
Mern27 Newbie
Does she eat a lot of soy products? I have had my daughter on the Gluten-free Casein-free diet but was giving her soy yogurt. She kept complaining about her stomach hurting too. She is no longer eating the soy yogurt and we have not had any problems.

You have come to the right place! I am new to all this too so I don't dare act like I know much. Everything I have learned has been from people on this website. I cannot tell you how supportive and helpful it has been for me. I think the parents know more here on the website than any doctor.

Good luck and I hope you find the information you are looking for!

Kathleen

Thank you for your reply. The only soy I have her on is soy milk...ocassionaly soy ice cream (once a month maybe). She tested negative to soy reaction so I would think it must be something else. Did your daughter have teeth problems? My daughter has had probably about a dozen cavities and I take very good care of her teeth. I heard that this can be a sign of malapsorption? I'm sure the dentist must think I am an awful teeth brusher! She also has swollen abdomen alot.

Mary-Ellen

Link to comment
Share on other sites
MammaW Newbie

Hi there, I am very new to all this too. We don't even have a diagnosis for my 1 year old, but I have learned SO much from everyone here on this board. I wish I could remember all the good postings I have read that sound similar to yours, but I guess I would just say keep reading and reading here on this board -especially the "parents with kids" section and you will soon have many suggestions. I personally am considering the enterolab testing that everyone has suggested, but I still haven't decided yet or I may just stay gluten-free for my little guy for now and see how it goes. It is a week today of gluten-free and we have it a little rough because of a known rice allergy. so many gluten-free foods are made with rice. but good luck and definitely keep reading on here. Everyone has been wonderful!

Link to comment
Share on other sites
confusedks Enthusiast

I just wanted to say that even though she came back negative for a soy allergy, she may have a soy intolerance. The difference is an intolerance won't kill her. A soy allergy would give her symptoms like hives, weazing, etc. I have a soy intolerance but I also tested negative to the soy scratch test and blood. But it does give me terrible headaches AND stomach problems.

Kassandra

Link to comment
Share on other sites
Darn210 Enthusiast

Hi Mern, Welcome to the board.

Typically, Celiac disease will be diagnosed through a GI doc, not an allergist. Celiac disease is NOT an allergy. I'm assuming you don't have a GI (yet ;) ) so it may be quicker if your pediatrician would be willing to write up the lab request for a Celiac panel (the list that Happygirl had in her post). You may also want to add the Celiac gene panel which will tell if she is genetically predisposed to it. You're daughter has racked up quite a few of the "typical" Celiac symptoms. Don't except "not allergic to wheat" as a definitive answer. I think you're on the right track doing some research here. Good Luck.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



gfpaperdoll Rookie

the bad teeth is so common for children with a gluten problem. If you are not wanting an official diagnosis, I would just go gluten free & dairy Free & no soy milk, some soy milk etc, is not gluten-free. no one really needs soy or dairy.

my 9 year old double DQ1 granddaughter has lost all the enamel on her teeth. Her little borther age 7 has had the cavity problems and has a couple of spacers... Dentists need to be aware that excess cavities and dental problems in children is almost always due to a gluten problem, well unless they are 5 & still nursing a bottle at night ;) these grandchildren are not gluten-free because it just ruins my sons life - his words not mine. I am a little more than upset to see their health going down the tube... The 9 year old was also battling pneumonia most of last year & used to have asthma type attacks & has numerous hives & itchy rashes

& yes, I love Enterolab.com for testing, especially for children. i do not believe in an endoscopy for a child & if you have read the posts about the dangers of anethesia for children which everyone in the medical field knows & also they can easily get a hole poked in their intestines or have bleeding problems... etc etc. and not counting the fact that everyone should stay as far away from a hospital as they can unless they absolutely have to be there because of all the super bugs that hang around hospitals, & the hospitals have spent years glossing over that fact...

Link to comment
Share on other sites

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - BluegrassCeliac replied to lasthope2024's topic in Food Intolerance & Leaky Gut
      7

      This forum might be the last hope I have in my life. Please I beg you

    2. - Scott Adams replied to Nacina's topic in Related Issues & Disorders
      1

      14 year old with Celiac & EOE still suffering...

    3. - Nacina posted a topic in Related Issues & Disorders
      1

      14 year old with Celiac & EOE still suffering...

    4. - trents replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.

    5. - Fluka66 replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,069
    • Most Online (within 30 mins)
      7,748

    angie78
    Newest Member
    angie78
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • BluegrassCeliac
      Hi,   Not saying Thiamine (B1) couldn't be an issue as well, but Mg was definitely the cause of my problems. It's the only thing that worked. I supplemented with B vitamins, but that didn't change anything, in fact they made me sick. Mg stopped all my muscle pain (HCTZ) within a few months and fixed all the intestinal problems HCTZ caused as well. Mom has an allergy to some sulfa drugs (IgG Celiac too), but I don't think I've ever taken them. Mg boosted my energy as well. It solved a lot of problems. I take 1000mg MgO a day with no problems. I boost absorption with Vitamin D. Some people can't take MgO,  like mom, she takes Mg Glycinate. It's one of those things that someone has try and find the right form for themselves. Everyone's different. Mg deficiency can cause anxiety and is a treatment for it. A pharmacist gave me a list of drugs years ago that cause Mg deficiency: PPIs, H2 bockers, HCTZ, some beta blockers (metoprolol which I've taken -- horrible side effects), some anti-anxiety meds too were on it. I posted because I saw he was an IgG celiac. He's the first one I've seen in 20 years, other than my family. We're rare. All the celiacs I've met are IgA. Finding healthcare is a nightmare. Just trying to help. B  
    • Scott Adams
      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
    • Nacina
      Hello, I am a 45 year old mom, who was diagnosed at 29 with Celiac. My now 14 year old son was diagnosed just before his 4th birthday. Needless to say, we are old pros with the diet. He was experiencing some issues, overall health took a major plummet a year ago, and through a bit of work, was diagnosed with EOE. Tried diet alone, but his follow up endoscopy didn't show the improvements his DR. wanted to see, so I tried the medication. (Steroid). He became extremely backed up, and they had him taking Miralax daily. His health plummeted. He is a straight A honor's 8th grader who plays club soccer very competitively. His health continued to decline and at 13 had a colonoscopy and another upper gi. (He was still compacted even with the prep). I finally pulled him off all meds and mira lax, after reading much negative literature online, and put him on a gut detox diet and took him to a nutrition response dr. Finally things have improved. However...over a year later and he is having relapse stomach pain, debilitating stomach pain. Missing a day of school a week, to three this week. This is where we downward spiral with him. He says it doesn't feel the same as when he has gotten backed up before. He is eating prunes, taking his supplements, drinking water...all of the things. Yet, he is feeling horrible. Pain is abdomen, headache, lethargy, diarrhea . He is on a strict gluten dairy, egg free diet. He has adapted well in regards to diet. But I feel like we are missing something here. He is too active, too outgoing to be feeling sick all of the time. His Bilirubin is constantly high. His white blood count always runs slightly low. His vitamin D was very low last time he ran tests, (last month) when he was sick for a week. His celiac markers show negative, so it isn't that. His last endoscopy showed no Eosinaphils in his esophagus.  I have taken him to multiple Ped. Gastro specialists. They run tests, and we get zero answers. I meticulously go through labs, hoping to make some sense and maybe catch something. Any thoughts or ideas would greatly be appreciated. 
    • trents
      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
×
×
  • Create New...