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

Does This Sound Like Celiac?

KAG

Recommended Posts

KAG Rookie
KAG
Posted

Been dealing with digestive disorders for 12 years (since I was pregnant with daughter). Diary allergies longer but unknown. Candida problems. Low thyroid. I have been mostly gluten free for 4 years, but still problems. Recently went back to doctor. I alway thought I was celiac, but still having problems. Since I went back to doctor, found out about egg allergies (I feel so stupid that I didn't connect this before).

My new doctor is doing a colonoscopy (previous polyps) and endoscopy. Also blood tests. I need to be on gluten for 3 weeks prior (according to doctor). I was afraid going back on gluten. I have now been eating gluten for 3 days. These are the symptoms I am now noticing:

weight gain (not eating more)

very sweaty palms and feet

feel hot most of the time (have not adjusted throid meds)

constipation

feels like my lungs are bruised when I breath in deap or twist (hard to explain)

hard time breathing like the air is very polluted

I wake up around 3AM like I was jolted awake and hard to get back to sleep (I don't have sleep problems)

acne getting worse

some smelly gas (I found out the eggs were causing most of the smelly gas, did I mention how stupid I feel?)

Does this sound like celiac? It doesn't sound as bad as a lot of what I read here. It does sound like some kind of allergy though, doesn't it? I guess I want to see what the results are going to be from my tests, but then I probably won't eat gluten again afterwards. I want to know for my childrens' sake. It might help.

Kim

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

Celiac.com Sponsor (A8-M):


gfgypsyqueen Enthusiast
gfgypsyqueen
Posted

Celiacs is such a fun disease! Yes it sounds like you should be tested. Some people gain weight, some lose weight. Some have diarrhea, some get constipated. Acne getting worse makes sense. Your intestines are inflammed so you get acne, others get eczama. My child gets eczama so badly it wakes her up at night scratching it to the point of bleeding. That is from a dairy allergy. Some people have sleep problems too. I get nightmares when I am glutened. It really sucks.

Unfortunately this disease does not have a clear cut list of symptoms, so it is hard to diagnose. And once you are dignosed be prepared for your family to make some pretty bad comments. I have heard it all from my family and we are a very loving and supportive family. (THAT doesn't come from my side of the family!) Eventhough there are tons of autoimmune disease and intestinal problems on that side of the family. Followed by family members refusing to get tested when they have symptoms, then telling me that I am wrong celiacs is not genetic! Best you can do is try to educate them and keep yourself healthy!

Best of luck!

nikki-uk Enthusiast
nikki-uk
Posted

Sorry to point out that 3 weeks back on gluten after being gluten-free IS NOT long enough for you to gain a positive blood test OR biopsy - your doctor is wrong :(

Ideally - you would need to back on a high (at least 4-6 slices of bread) a day for 6 weeks or more for a blood test. Some would say even longer for the endoscopy.

KAG Rookie
KAG
Posted
  • Author

I don't think that I can be on gluten for 6 weeks. I can't live in a hermit shell by myself for that long. (I guess I do have ups and downs when I am eating gluten!) But then that makes no sense either. I want to be diagnosed so that I can see that I am NOT crazy, but being gluten free is so hard. I mean, what is really hard is no gluten, dairy, eggs, alcohol (bad reaction to), processed foods, potatoes, sugar. When I eat really well I know I feel great but why is it so hard? I LOOOOOOVE food. It just doesn't love me.

I guess I'll see what my results are and hopefully they will come back with something.

Until then, I'll enjoy beer and biting people's heads off!

CMCM Rising Star
CMCM
Posted

Each person reacts differently to the effects of gluten poisoning the body...yes, poisoning....that's what is happening. If you continue eating gluten a whole boatload of other sensitivities can start popping out because the gluten is causing your immune system to be increasingly reactive. This happened with me....for simply years and years I thought MY problem was dairy. I knew my mom had celiac disease since I was 16, but since my symptoms weren't so strong and violent as hers, I never suspected celiac disease for myself. But over the years, I had more and more intestinal upset, headaches, asthma, joint aches, lots of stuff. And more and more foods seemed to be problematic. Before I finally figured it all out and got appropriate testing, I was at the point of believing there wasn't much I could eat except perhaps water. Seriously! I was in continual upset, and then I had a very frightening episode of vertigo that scared the dickens out of me. That's when I started really looking at this in a state of desperation. I got tested thru Enterolab, went gluten free, and within a couple of weeks I felt like a new person. Bit by bit, the other sensitivites lessened and at this point, 17 months later, I can actually tolerate moderate dairy again. I have to eat carefully, but most of the time I feel good.

There are so MANY symptoms that can be linked to celiac disease and/or gluten sensitivity. Too many to list, actually! I guess the message is that there is no one set of symptoms that point to celiac disease. For the things you mentioned, it would be good to test for celiac disease. And if you prove to have celiac disease, over time if you go gluten free, you will most likely see your other physical complaints go away, some faster than others, but they could all go away eventually.

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. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      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?
    2. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      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...
    3. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

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

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    5. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Son's legs shaking

      @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...
  • 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
      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! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      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
      Son's legs shaking

      By knitty kitty · Posted

      @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!
×
×
  • 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.