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

So Many Questions ,


cloudsxxx

Recommended Posts

cloudsxxx Newbie

So I am awaiting test results from my doctor , in the mean time he has asked me to go on a gluten free diet also dairy free to see how I will feel. I have started to do so and after not even 2 weeks i already feel better , but I still have questions. I have done allot of reading on this and what keeps popping up in most of my readings is that people usually experience significant weight loss and well how to put it lightly ( get the runs ) lol, but I am a bigger girl I weight around 170 I actually put on 40 pound in the last year, no madder how hard i try to exercise, and eat well without yo -yo-ing nothing seems to work , I also get blocked up instead of getting the (runs) lolol , how is it then that I could possible have celiacs. Oh also .... does gluten allergy always mean u have celiacs, is it the same thing ?


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



Celiac.com Sponsor (A8-M):



GottaSki Mentor

Welcome!

THE BIGGEST problem with doctors and most information related to Celiac Disease online/in the media is that you have to be underweight with diarrhea to be considered for Celiac Disease. FALSE! FALSE! FALSE!

Sorry for the rant, but I went undiagnosed for 43 years because of this misinformation throughout the medical community.

Many with Celiac have chronic constipation rather than diarrhea. Many are overweight rather than underweight. Those with Celiac Disease come in ALL ages, shapes and sizes. Although I weighed more than I should - healthy diet and tons of exercise stopped controlling my weight in my 20s - all of my nutrients were far below normal. My body was not absorbing nutrients because the damage to my small intestine was severe. Some theorize that the body goes into starvation mode because it is trying to retain as many nutrients as possible thus causing the weight gain. Celiac Disease and Thyroid problems often occur together. If you are heavier than you should be - your thyroid should be tested. TSH along with Free T3 and Free T4 - the TSH is not enough.

I am happy to hear you are already having improvement gluten-free, but am concerned that you had the proper tests. Your doctor had you go gluten-free a bit prematurely. Should you need further blood testing or endoscopic biopsy to diagnose Celiac Disease - you need to be ingesting gluten!

If your doctor did run a full celiac panel you have your best chance for diagnosis without the need of endoscopy. Often doctors will only run one Celiac screening blood test - this is not enough. If the tests that were run are positive, you have Celiac Disease.

If the tests are negative, you may need more tests or may have Non-Celiac Gluten Intolerance (NCGI) - there are no tests to diagnose this. That being said - you having improvement in two short weeks is a great indication that you have either Celiac Disease or NCGI. Testing nutrients can be another indicator of Celiac Disease - if your doctor hasn't run them request: Vitamins Bs, D, K and Minerals Iron, Ferritin, Copper and Zinc - other folks suggest A and Magnesium be added to the list.

Although the solution is the same for Allergy, Celiac Disease or NCGI - remove ALL gluten - an allergy to gluten is not the same thing as Celiac Disease. In Celiac Disease there is and auto-immune reaction to gluten - your body produces antibodies to destroy gluten - in the process the small intestine is damaged - the villi are destroyed which prevents proper absorption of nutrients which can cause many systems of the body to fail. There are over 300 symptoms of Celiac Disease including digestive, muscle/joint pain, fatigue, behavioral, skin rash and many, many more. An allergy is a histamine reaction - severe allergic reactions can be dangerous as they can cause swelling / severe breathing problems. It is important to know if you have an allergy to gluten - it is rare but possible to have both allergy and Celiac Disease.

You have found a great place for information and support as you learn to live gluten-free. Read and ask questions - the transition to completely removing gluten is tough, but the benefit to your health is well worth the effort!

Good luck to you :)

mushroom Proficient

Hi and welcome.

To answer your last question first off, celiac disease is actually not an allergy - it is an autoimmune response by the body to gluten. This means that the body mistakenly starts attacking itself. An allergy is when you develop hives or anaphylacic shock after eating something.

There is a mistaken belief by many that you have to have lost weight in order to be a celiac. This leads to many people not being tested by their doctors because they obviously are not starving :rolleyes: In actual fact, it is just as common, most especially in adults, to gain weight that just cannot be lost. It is apparently because the body is not absorbing the nutrients it needs and reacts as if it were starving by storing all the calories it can find. You can still be deficient in many nutrients and very much overweight. Also, constipation is just as common as diarrhea. So you definitely fit in the spectrum of celiac symptoms.

I hope you get some definitive answers in your testing. Bear in the mind, though, that there is an error rate in the testing or you may be non-celiac gluten intolerant. It is usually recommended that if your testing comes back negative that you give the diet a trial for three months to see if gluten is your problem.:)

psawyer Proficient

Weight loss and diarrhea are common symptoms, but are not universal. Some gain weight. Some experience constipation.

nvsmom Community Regular

I've had "C" and celiac my entire life. My mom told me stories how as an infant, I would get so blocked up that they would have to "help me" get things going with thermometres inserted where... ahem, you used to take a baby's temperature. :huh: This is back in the day when they introduced "solids" in the form of a thin wheat gruel before a baby was one month of age. :rolleyes:

I also have hypothyroidism (as Lisa said, it's fairly common) and that also causes "C". Taking hormones to treat my Hashimoto's hypothyroidism was the thing that finally caused my chronic "C" to lessen considerably. Yeah! :)

As an adult, I've been a bit heavy for my height. I could do with losing a few... and I did when I went gluten-free. I lost about 15 lbs in the first 2-3 months without trying to cut back... I even went on vacation while the weight was coming off. :) I still could lose another 20 but my BMI is no longer in the overwieght range.

Best wishes!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,902
    • Most Online (within 30 mins)
      7,748

    Patty6133
    Newest Member
    Patty6133
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Xravith
      Yes, you are right. Indeed, I’ve been feeling anemic since the beginning of this week, and today I felt horrible during a lecture at the university, I was trembling a lot and felt all my body incredibly heavy, so I had to come back home. I’ll do a blood test tomorrow, but I’m just worried about the possibility of it coming back negative. I’ve been eating two cookies in the morning as my only source of gluten over the past two weeks—could that affect the final result?
    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
×
×
  • 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.