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

New With Questions


angxmas

Recommended Posts

angxmas Newbie

Hi, I'm new here and new to all of this. I haven't had any tests at all for celiac or gluten sensitivity. I'm working on gathering info from EnteroLab to try to figure out what tests I should order. I'm wondering if any of you can give me any advice. I also want to give you a rundown of symptoms and see if I'm on the right track. Both for myself and my dd.

I have had trouble with bloating and flatulence for a few years now. In the last few months it seems it has gotten worse. Seems as though everytime I eat I'm bloated and just feel generally yucky. The last couple of days I've stayed away from gluten and seem to be feeling some better. Not so much of the "fullness" feeling I have so much of the time. I don't have problems with D so much as C. I've had problems with C since my first pg and she will be 9 in May. So, I'm not sure if that was the beginning of this illness or what. I also have FMS. So, I have achiness every day. I get headaches that shoot from the back corner to my eye at times. It's not all the time but seems that some days I will have them off and on all day and other days I don't have them at all. I haven't correlated them with any type of food yet. But I also didn't know to correlate them with gluten until recently. I don't think I have had any of the headaches in the last couple of days, though, and I have had no gluten. So, maybe that's part of it?

Now, my dd. She was very colicy as a baby. She (and I) also had problems with thrush. She did eventually get over it. I, on the other hand, didn't until she was weaned. She told me recently that her tummy always hurts and she is constantly gassy. We have tried eliminating lactose and that doesn't seem to be the problem. She has dark circles under her eyes and seems to be tired alot. She's only 5 so these aren't normal symptoms for children her age. She is a very happy little girl and pleasant to be around. But she's not as healthy as her brother and sister are. She also still has toilet issues. She was next to impossible to potty train. She is trained now. But she still has accidents. Seems as though she just doesn't realize she needs to go at times. Does that have anything to do with gluten??

Sorry, I feel as though I am rambling. Just trying to figure this all out. I want my stomach to be straightened out so that I can go somewhere without worry about feeling ill. And, more so, I want my little girl to be healthy. So, what tests would be recommended from EnteroLab? And is it necessary to go through a dr at all for any type of testing. I don't have ins on myself. So, I need to do as little as possible. If more is required for my dd, though, I will gladly do it.

TIA for all your help! Just from lurking the last few weeks I can see how helpful and kind you all are!

Angela


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



Celiac.com Sponsor (A8-M):



Guest nini

Hi there and welcome!

I don't know much about Enterolab other than most insurance won't cover it and you'll have to pay out of pocket for your tests. I do know that most everyone that has gone through them has been pleased.

My personal experience was going through the medical community and getting a definitive answer for me that way, but my opinion now is that if you try the diet and it works for you and your symptoms go away, then POSITIVE DIETARY RESPONSE is THE most valid diagnostic tool. Blood tests and biopsies can only confirm it if positive, they cannot ever rule it out if negative due to many different factors.

If you are on a budget and trying to do this on your own IF YOU WILL BE OK WITH SELF DIAGNOSIS if you do have positive results from the gluten free diet, then go ahead and try the diet for you and your daughter. Some people need some piece of paper to validate a dx, but I think we are too accustomed to giving Dr.s too much power in our lives and we don't listen to our bodies enough.

If you want to go ahead and try the diet, and give it a good six months before you decide if it's working... keep a log of symptoms and when you notice things either improving or not, right them down in the log. Track your meals in a food diary and keep track of any reactions to anything.

If you would like, I have a newbie survival kit, a collection of files that I have collected over the past 3 years, menus, meal options, food lists, school supplies etc... just e-mail me at nisla@comcast.net and in the subject put "request newbie survival kit"

DonnaD Apprentice

My girls were both colicky babies. I used to want to throw them out of the window, they used to yell from 6-11pm every night.... I felt like the worst mother ever.

After my tiny 11yo biopsied celiac disease in November I did Enterolab myself as I had given conventional medicine 40 + years without much luck. The rest is history!

Donna

CMCM Rising Star
Hi, I'm new here and new to all of this. I haven't had any tests at all for celiac or gluten sensitivity. I'm working on gathering info from EnteroLab to try to figure out what tests I should order. I'm wondering if any of you can give me any advice. I also want to give you a rundown of symptoms and see if I'm on the right track. Both for myself and my dd.

I have had trouble with bloating and flatulence for a few years now. In the last few months it seems it has gotten worse. Seems as though everytime I eat I'm bloated and just feel generally yucky. The last couple of days I've stayed away from gluten and seem to be feeling some better. Not so much of the "fullness" feeling I have so much of the time. I don't have problems with D so much as C. I've had problems with C since my first pg and she will be 9 in May. So, I'm not sure if that was the beginning of this illness or what. I also have FMS. So, I have achiness every day. I get headaches that shoot from the back corner to my eye at times. It's not all the time but seems that some days I will have them off and on all day and other days I don't have them at all. I haven't correlated them with any type of food yet. But I also didn't know to correlate them with gluten until recently. I don't think I have had any of the headaches in the last couple of days, though, and I have had no gluten. So, maybe that's part of it?

Now, my dd. She was very colicy as a baby. She (and I) also had problems with thrush. She did eventually get over it. I, on the other hand, didn't until she was weaned. She told me recently that her tummy always hurts and she is constantly gassy. We have tried eliminating lactose and that doesn't seem to be the problem. She has dark circles under her eyes and seems to be tired alot. She's only 5 so these aren't normal symptoms for children her age. She is a very happy little girl and pleasant to be around. But she's not as healthy as her brother and sister are. She also still has toilet issues. She was next to impossible to potty train. She is trained now. But she still has accidents. Seems as though she just doesn't realize she needs to go at times. Does that have anything to do with gluten??

Sorry, I feel as though I am rambling. Just trying to figure this all out. I want my stomach to be straightened out so that I can go somewhere without worry about feeling ill. And, more so, I want my little girl to be healthy. So, what tests would be recommended from EnteroLab? And is it necessary to go through a dr at all for any type of testing. I don't have ins on myself. So, I need to do as little as possible. If more is required for my dd, though, I will gladly do it.

TIA for all your help! Just from lurking the last few weeks I can see how helpful and kind you all are!

Angela

As a baby I was much like your daughter. My mom couldn't breast feed, I couldn't drink cow's milk, I had terrible colic for months, and finally I was able to drink goat's milk. So my whole life I always knew dairy was an issue, but I actually didn't consider the celiac thing as a reason for my digestive problems. My mom was diagnosed celiac back in 1969, but I was never skinny so I didn't consider that for myself. After finding out about Enterolab and reading about all the tests, I decided rather than doing it piecemeal and more expensively, the best thing was the full gluten panel, which included the casein sensitivity test as a bonus, and also the gene test. This full panel covers most of what you'd want to know. The gene test will show if there's a predisposition to celiac/gluten sensitivity at the very least, but if you found out you had the genes, you'd then want to get other tests, so my rationale was just do it all at once, which is much cheaper than buying the various tests bit by bit. The price now is about $369 I think, but it's well worth it. That includes shipping the kit to you, and then when you send it back you just call DHL and it's all prepaid and they come to your house to pick it up and overnight it to Enterolab. It's best to arrange things so you can have the sample picked up on a Monday or Tuesday. I called DHL the night before I wanted the pick-up, and they can tell you within just a couple of hours time frame when they'll come for it.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Rogol72 replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

    2. - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

    3. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

    4. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

    5. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,911
    • Most Online (within 30 mins)
      7,748

    Cici123
    Newest Member
    Cici123
    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

    • Rogol72
      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
×
×
  • 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.