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

Could This Be Celiac


confused

Recommended Posts

confused Community Regular

Hello, im new to this forum. I have been to the Er many times in the last few weeks. The first time they told me i was severly constipates. Then the second time they said they had no idea what was wrong with me. Then the third time, they said it was gastritis. I then went to see my dr, and asked for an celiac panel done, only the IgA and IgG levels were done. The IgG was High and IgA was normal. I have had mouth sores now for over an year and today i woke up with severe joint pain in my knees. I have tried to research these ailments and it shows lupus or celiac. Does anyone else have these symptoms.

dan


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



Celiac.com Sponsor (A8-M):



Tritty Rookie

Hi Dan-

I'm brand new to this too. I've had D since September every morning for hours. I had plurisy and have had terrible mouth sores (in my throat even!) since August. My wrists ache something terrible. My blood test came back positive for celiac (I need to call the Dr now that I've been on here and find out exactly which ones he did) and the GI is doing an endoscopy on Tuesday. I started the diet 3 weeks ago and noticed a HUGE difference within a week. The D stopped. Finally the next week the weight loss stopped. My wrists and mouth sores still here though... :(

So some similar symptoms - enough that they should look into it more....

GFBetsy Rookie

Dan -

Celiac is definitely a possibiblity. If I were you I'd visit the NIH (National Institute of Health) website and print up some articles on celiac. I'm not sure if they've got a list of the necessary tests, or not, but tell your doctor that the Gliadin antibody tests are not very sensitive or specific, and that the endomysial and tissue-trans-glutaminase tests are the currently accepted "best" blood tests for celiac. Ask him to run your bloodwork again.

Do this before you go on a gluten free diet, as going gluten free can cause a falsely negative result on the celiac blood tests.

Good luck!

confused Community Regular
Dan -

Celiac is definitely a possibiblity. If I were you I'd visit the NIH (National Institute of Health) website and print up some articles on celiac. I'm not sure if they've got a list of the necessary tests, or not, but tell your doctor that the Gliadin antibody tests are not very sensitive or specific, and that the endomysial and tissue-trans-glutaminase tests are the currently accepted "best" blood tests for celiac. Ask him to run your bloodwork again.

Do this before you go on a gluten free diet, as going gluten free can cause a falsely negative result on the celiac blood tests.

Good luck!

Well i got the other test results today and they came back negative. So the only test that was high was the IgG, so i am so confused at what this means now. Does this mean i might have an intolerence just to specific things and not everything like in celiac disease. Or does this mean i am fine and have no intolerence.. Does anyone else just have high IgG levels?

dan

Nancym Enthusiast

You can have negative blood tests and still have biopsy proven celiac. In some forms it doesn't manifest in the intestines at all but in the brain, liver or skin. However, most doctors didn't learn this in school and they're ignorant.

For anyone with IBS you really should give the gluten-free diet a try, I'd recommend dairy free too since dairy causes a lot of constipation for many of us.

confused Community Regular
You can have negative blood tests and still have biopsy proven celiac. In some forms it doesn't manifest in the intestines at all but in the brain, liver or skin. However, most doctors didn't learn this in school and they're ignorant.

For anyone with IBS you really should give the gluten-free diet a try, I'd recommend dairy free too since dairy causes a lot of constipation for many of us.

So are you sayin g it might be IBS?

kairey Newbie
Hello, im new to this forum. I have been to the Er many times in the last few weeks. The first time they told me i was severly constipates. Then the second time they said they had no idea what was wrong with me. Then the third time, they said it was gastritis. I then went to see my dr, and asked for an celiac panel done, only the IgA and IgG levels were done. The IgG was High and IgA was normal. I have had mouth sores now for over an year and today i woke up with severe joint pain in my knees. I have tried to research these ailments and it shows lupus or celiac. Does anyone else have these symptoms.

dan

Hi Dan

I'm new to this also - your symptoms sound similar to those I had before I was diagnosed three years ago. I thought I had a virus at first as I felt ill and had diarrhoea. Afer a week, my shoulder became really painful and stiff and this was followed by my knees, finger knuckles and toe joints. I had suffered from mouth ulcers for years on and off including ulcers on my tonsils and was booked in to have these removed.

My Doctor sent me for blood tests which came back negative for coeliac disease but she wouldn't give up and after an endoscopy, I was diagnosed with coeliac disease - the damage to my gut was described as severe. After two weeks on a gluten free diet, I felt like a new person and have had no mouth ulcers or joint problems since. I get the odd bout of pain and intestinal upsets if I have inadvertently eaten somthing containing gluten. I declined to have my tonsils removed and have not had a sore throat since.


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



Celiac.com Sponsor (A8-M):



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. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    2. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    3. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    4. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

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

      Anti-endomysial Antibody (EMA) Testing

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

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748

    KABoston
    Newest Member
    KABoston
    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

    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      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
      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
      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!
×
×
  • 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.