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

Do I Have Celiac Disease?

Leigh Ann

Recommended Posts

Leigh Ann Rookie
Leigh Ann
Posted

Hello,

I am new to this board, and i hope I have found hope and experience in this forum. I really need support by others with celiac disease. Let Me tell you about me...I am 33 female my digstive history has been as such....

Malrotation of the colon...surgery to remove 9 inches of colon, IBS, GERD, and Hiatus Hernia. I have spent most of my llife on Prilosec or Nexium. I have bee anorexic for no apparent reason in my past and then came out of it. I am always distended after I eate...an I go through periods of symptoms that are unexplainable for years....a friend suggested I share these symptoms with other celiac disease patients to see if anyone experiences the symptoms that I have ongoing and periodically....Help i dunno how to pursue this agressively or anything. I have scheduled an appoinment with my Gastroenterologists for the 31st

My Symptoms (some present all the time others not);

constant diarhea mucus like and fatty- somedays worse than others

bloating and distention-always after I eat and a few hours later

headaches

irritated easily-I am usually so kind

loosing weight with out effort

blister or bumps on skin- year and a half ago it was severe and itchy on my upper arms I have scars today where I would scratch them they itched so much...now I get them only popping up here and there like on my forearms, head, back, and get sores on the corners of my mouth.

I have burning tongue and mouth periodically with no warning

I am TIRED all the time, and weak to want to do much

When I eat macaroni lately I really get so sick...the worst!

there is so much more...but can anyone help? Does this seem like I should demand some sort of test and if so what?

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

Celiac.com Sponsor (A8-M):


jaimek Enthusiast
jaimek
Posted

Leigh Ann- sounds to me like you have all of the classic symptoms of Celiac. I am not even close to being a doctor but I definitely think that you should get a blood test to see if you have Celiac Sprue and then follow up with an endoscopy to make it conclusive. I am 26 and was just recently diagnosed. I did have some of the symptoms that you are experiencing (headaches, irritability, weight loss, hernia, etc.) so I am thinking that a gluten-free diet might be your answer. Hang in there, as soon as you have the tests all you need to do is follow the strict diet and you will be cured of all of those nasty symptoms. Good luck and let me know how the test results come out!!! :D

Guest jhmom
Guest jhmom
Posted

Hi Leigh Ann, welcome :D

I had a lot of the same symptoms you mentioned before my diagnosis. Since you have not seen a GI doc yet at your first visit you should request him to run a "Celiac Panel". I think there are like 5 tests (not sure) but I do know about the: Tissue Transglutaminase IgA

Antigliadin Antibody Panel Gliadin AB IGG

Gliadin AB IgA

Also I suggest you write down all the symptoms you experience and try to keep a food diary to show him what foods seem to give you a problem.

I hope you feel better soon! :)

Leigh Ann Rookie
Leigh Ann
Posted
  • Author

Thanks to those who replied...anyone else with advice...and have these symptoms?

I can not wait til my appoinment

Dwight Senne Rookie
Dwight Senne
Posted

Hi Leigh Ann,

Yes, I agree that you have many of the traditional symptoms of Celiac. I had many of those same symptoms prior to my diagnosis. The key word in that sentence was "had"! :D

Please do not "demand" anything of your doctor! That may put him/her on the defensive and actually be counterproductive to your health. Instead, explain your symptoms and ask if a Celiac Panel blood test is warranted.

If the doctor says any one of your symptoms are not indicative of Celiac, or if you are missing a symptom that is indicative of Celiac, please mention that recent studies indicate there are no absolute symptoms of Celiac Disease. In fact, some recently diagnosed patients show no symptoms at all! The disease was found while looking for something else!

The University of Chicago recently had a free Celiac screening. If I remember correctly, they had several asymptomatic subjects test positive on the Celiac panel! You may want to research this before seeing your doctor, so you actually have some legitimate ammunition.

In all cases, try to be cooperative with your doctor. The fact that you have many of the symptoms does not automatically mean you have the disease. Your doctor is still the authority. Work with him/her to find the root cause. If, after reasonable time and effort, you feel your doctor is not cooperating, by all means, find a new doctor!

Guest aramgard
Guest aramgard
Posted

Leigh Ann, Try going on www.celiacwalk.org and checking it out. On May 22 there will be a celiac walk, where they will give free blood screening for Celiac disease. If you live close to one of the walks, this may give you an alternative to your own doctor. It costs $18 for the 1k and the blood screening is free. The money raised will go to research on Celiac disease. Prometheus labs do the blood work. I hope this helps. Shirley

  • 2 weeks later...
wildones Apprentice
wildones
Posted

I have to disagree, slightly with another post about how best to deal with your doctor. I agree you need to have as much information as possible to bring to your doctor. Research and studies in medical journals are generally a MUCH more effective way to approach doctors.

Where I disagree is in asking the doctor if they think a test for celiac disease is warranted. The symptoms you describe DO warrant a blood test. Some doctors will decide within a few seconds (literally) of walking in the room, what is going on with you. Some doctors will dismiss a patient's very valid concerns. If you bring them, in writing, a list of your symptoms and concerns, and research from medical journals (found here possibly) and request bloodwork be done, I think any reasonable doctor would order the tests.

My understanding of the test is that it is CRITICAL to get all 5 screening tests done, in order to get accurate results. If you bring info from one of the labs that does all 5 tests, you will probably get much better response from your doctor. Prometheus labs is one of the labs that does a comprehensive screening panel. It is also VERY important that you remain on a diet that contains gluten before your testing is done, in order to get accurate results.

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

Celiac.com Sponsor (A8-M):


Guest aramgard
Guest aramgard
Posted

Unfortunately I have dealt with doctors for many-many years who do not understand or know about the symptoms of Celiac disease. I always carry a written statement of my symptoms and explain all of the testing that has been done to me before. The doctors I have dealt with are not experts in the symptomotology of Celiac disease nor are most of the willing to study the symptoms to learn. The doctor who diagnosed me was willing to take my word for the fact that I thought it was Celiac and do all of the testing, so I stuck with him, because he believed me. This is a first for me, a doctor who actually believed what I was telling him. He did the blood work which was positive, then sent me to the GI doctor who did the endoscopy and confirmed the diagnosis. He just couldn't believe I had Celiac disease. My symptoms began when I was around 14 with the dermatitis and progressed to the intestinal problems because I was never diagnosed properly. I am now nearly 70 years of age and was diagnosed 3 years ago. This doesn't speak well for our medical professionals. Shirley

lionphish Newbie
lionphish
Posted

Hi,

I'm 22 and for the last two years have been suffering with digestion problems (like heartburn constipation diahrea etc) and more recently for the last 6 months i've been getting really sick with diahrea, feeling week, constipation, never finishing a bowel mouvement etc Each time I have diahrea I get a skin rash that starts on my hands and ends up everywhere..My skin becomes really red and itchy...it sometimes feels like it's on fire. Now I don't know what's wrong with me. I've been trying to figure out what could be wrong...Gluten, diary, eggs I seems like I can no longer digest anything and I don't know what to do. I'm afraid to go very far from home in case I get sick, I'm afriad I'll be at school by myself and get an "attack" and not be able to get home in time. I stoped eating gluten and it doesn't seem to be helping. I thought I might try eating gluten again to see if I felt worse or not....I just don't know what to do anymore...

plantime Contributor
plantime
Posted

How long have you been gluten free? Are you sure you're not getting contamination? Sometimes it takes a long time for damage to heal. If you have had diarrhea constantly for 6 months, then you probably have significant damage. If you are not going to the doctor for bloodwork and biopsy, then stay gluten free for at least 6-8 weeks before trying gluten again. You have to give your body time to detoxify, then to heal.

lionphish Newbie
lionphish
Posted

Thanks...It's just so frustrating when your not sure what the problem is. Every time I eat something I wait and see if I'm going to get a reaction. It's hard to tell what food are hard to digest because in a day you eat more than one thing at a time. I'm a vegetarian and I don't eat gluten and I try to stay away from dairy and eggs. I try to eat healthy and avoid preservative and things like that...It just doesn't leave me with a lot of choices. I need help figuring out what to eat.

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

      Son's legs shaking

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

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

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

      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....
    5. 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!
  • 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
      Son's legs shaking

      By knitty kitty · Posted

      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
      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!
×
×
  • 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.