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

How Will I Know?


chrissy

Recommended Posts

chrissy Collaborator

my children seem to be fairly symptom-free, or at least they did not have what are considered the "normal" symptoms of celiac. i am not sure how we will be able to tell how good of a job we are doing at staying gluten-free. my 10 yr old has had stomach aches over the last few years---but not bad and only periodically. she does, however, complain alot about her legs either aching or feeling numb. could this be caused by her celiac? one of my twins has been nauseated for several months and has pretty bad reflux. the other twin has pretty bad rashes and it was discovered she has esophagitis---we had no idea that she had reflux. are all these things that could be caused by celiac? since they don't get "sick" from gluten, i don't know how we will be able to tell if they accidentally get some. we are only 6 days into a gluten free diet, we are reading labels, but some things just aren't clear (like i needed to tell you that. LOL!) the doc said they would probably get gluten sometimes by accident, but we needed to make sure they don't get it on purpose.

christine


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



Celiac.com Sponsor (A8-M):



jerseyangel Proficient

Hi Christine--I would think that the symptoms of stomachache, nausea, achey and numb legs, and rashes, while could be caused by something else, could also be caused by the Celiac. I have those myself, so that's why I say this. You could watch and see if the gluten-free diet helps with those symptoms. Remember that not every Celiac has GI troubles. It might be that they would have developed them later on if they weren't Dx at a young age. The label reading will get easier the more you do it and are familiar with the various brands that you use. Sounds like you really have your hands full there!

DonnaD Apprentice
" are all these things that could be caused by celiac? "

Hi Christine

YES ALL THOSE THINGS CAN BE CAUSED BY CELIAC! - My daughters main symptoms were stomach pain which started periodically, headache (which I now know to be migrane) nauseia after eating. She was also very tiny, on the 3rd centile. She could not tolerate milk, it gave her asthma. She often had odd aches and pains in her legs. After 2 courses of anitbiotics last year (I think this was her trigger) for bladder infections the stomach issues became so severe that her doctor thought she had appendics or kidney stones. Her bloods were all negative but he scoped and found a reflux (he was looking for H'pyloi and ulcers she was on ulcer meds.) and the biopsys were positive. Her consultant dx 'early coeliac d' and said we were very lucky to have caught it before she had too much damage a few years down the line. Lots of other things fell into place, mouth ulcers, sore cracked lips/corner of mouth, irritability (big time!) visual problems, lots of things we didn't know about until I found the terrific helpful people on this board. So she has now been gluten-free for approx 2 months, the change is amazing, she has grown 3cm (inch and a half) and gained 5lbs, she was in clothes for a 9 year old at age 11. She has colour in her cheeks and is so much calmer and will settle to an activity. She is sleeping a lot more too. I really hadn't realised how just how ill she was until she was better. (myself too :lol: )

When she does accidentally get 'gluted' she becomes really irritable again, fights with her sister,goes off like a rocket, slams doors the lot. She sometimes get tummy ache as soon as she eats something but not always, Also her vision goes funny and she won't read. You will learn to spot the signs in each of your children.

We started off only eating basic foods that we could check had no gluten. I have taught her to 'google' a food and find out from the company website or a celiac site that a food is OK. IF WE CAN'T CHECK IT WE DON'T EAT IT!!! :lol: I contacted companies like Cadbury, Muller, Waitrose (big UK supermarket) and they sent me long lists of food that is gluten-free. I contacted the manufacturers of gluten-free food here , Juvela, Glutafin etc and asked for their 'starter packs' which included lots of receipes, info and samples of bread, crackers, cakes, mixes. It has taken me a lot of time and effort to get this far and we both made mistakes at the start. It is hard but it does get easier.

I hope this helps,

Donna

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. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Son's legs shaking

    2. - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

    3. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Son's legs shaking

    4. - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

    5. - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748

    MaryannHall
    Newest Member
    MaryannHall
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

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

  • Posts

    • lizzie42
      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! 
    • Scott Adams
      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    • knitty kitty
      @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
      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
      @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!
×
×
  • 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.