Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Help! Continuing Symptoms

janu

Recommended Posts

janu Rookie
janu
Posted

I was tested in Feb. IGA was 11(equivocal) and IGG was 5(neg.) but I had been gluten-free for 2 months. Dr. adjusted my thyroid- I was hypothyroid, increased iron, vit.Dand Calcium. I felt great for about 2months. Now I've started in with symptoms again but have remained gluten-free. I also have 2 daughters with celiac disease. I haven't found a dr. in Cent.Oregon who is knowledgeable about celiac disease. I haven't seen a GI but wonder if I should seek out more testing like the genetic tests or a biopsy. My daughter's GI in Portland suggests strongly she have a biopsy. Her antigliadin panel was positive in all areas. I really feel lost and without good advice. I hope someone has some helpful suggestions. Thanks,

Jan :(

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

Celiac.com Sponsor (A8-M):


jknnej Collaborator
jknnej
Posted

Why were you gluten-free in the first place? Were your first tests positive?

What kind of symptoms do you have?

KaitiUSA Enthusiast
KaitiUSA
Posted

I ditto the previous post...that would be helpful to know

If you are in fact celiac then is there a way you could be getting gluten in through makeup or other products you use or are they gluten free to?

If you are 100% gluten free including with products you may want to try a food journal to see if symptoms flare up after any certain food. You may have an intolerance to something else as well. Have you had any sensitivity to milk? That can happen to alot of celiacs, especially at first.

Or there could be something else going on.

Since you have 2 daughters with celiac it is definitely in your family and your whole family should be tested because there are probably others who have it.

If your daughter had positive blood tests and has been gluten free a biopsy would do no good while being on the diet because the damage woud heal and results would be inaccurate. With all positive tests that pretty much concludes she has celiac. Which tests did she have done? There are certain tests which are very specific for celiac. In fact, the tTG test may become a replacement for biopsies for diagnosis in kids...there is an article about that on this site too.

You could get a gene test done. 98% of celiacs have the HLA-DQ2 or HLA-DQ8 gene. So that could maybe share some insight.

Also, Enterolabs may be an option to look into. They use stool samples to detect malabsorption, gluten sensitivity, gene testing, milk sensitivity, tTG, and so forth. It is not widely accepted by stubborn doctors who have to have it 1 way or its wrong. It is a very good test and I know alot of doctors who do support it.

Good luck

janu Rookie
janu
Posted
  • Author

To answer your question, I was gluten-free because I had given up on medical doctors after years of complaints of abdominal pain, diaharea, migrane type headaches, fatigue, high blood pressure and low back pain. Most of these symptoms didn't have a reasonable explanation for their cause and I was just being given meds to cover up the symptoms. I went to a naturapathic chiropractor and did a d-tox 6 week program and couldn't believe how well I felt after that so when it was over I just continued to stay away from gluten. I gradually added other foods back in but am still avoiding dairy products. I've eliminated a shampoo and hair conditioner that had wheat protein in it and have checked my make up and hair sprays. I'm leaning toward having the Enterolabs panel of tests done sine they claim that being gluten-free for a period of time will still allow a positive test result. I think my daughter should go this direction too instead of the biopsy. Her doctor claims that she needs to see the extent of intestinal damage. Does that make sense? You guys are great in taking the time to answer my questions. I'd like to find a doctor in Central Oregon who is "smart" about celiac disease but so far no luck. Thanks,

Jan :rolleyes:

KaitiUSA Enthusiast
KaitiUSA
Posted

Try looking at the home page of celiac.com and if you scroll down there is a link to recommended doctors by other celiacs. Click on that and then find your state. Maybe there is one around.

I can see that the doctor wants to see what condition her intestine is in..that would be the only reason for the biopsy. I personally don't know if it would be worth it..for me it wouldn't...I would either be lucky and not have damage yet..or have damage...the same course of action would be taken for either result. With her having positive blood results I would find that convincing enough.However, this is a personal decision that should be made.

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. trents
      - trents replied to Leslie Clark's topic in Gluten-Free Foods, Products, Shopping & Medications
      20

      Hidden Gluten in distilled vinegar

      Take it easy! I was just prompting you for some clarification. In the distillation process, the liquid is boiled and the vapor descends up a tube and condenses into another container as it cools. What people are saying is that the gluten molecules are too large and heavy to travel up with the vapor and so get left behind in the original liquid solution...
    2. Mynx
      - Mynx replied to Leslie Clark's topic in Gluten-Free Foods, Products, Shopping & Medications
      20

      Hidden Gluten in distilled vinegar

      No they do not contradict each other. Just like frying oil can be cross contaminated even though the oil doesn't contain the luten protein. The same is the same for a distilled vinegar or spirit which originally came from a gluten source. Just because you don't understand, doesn't mean you can tell me that my sentences contradict each other. Do you have a...
    3. Mynx
      - Mynx replied to Leslie Clark's topic in Gluten-Free Foods, Products, Shopping & Medications
      20

      Hidden Gluten in distilled vinegar

      The reason that it triggers your dermatitis herpetiformis but not your celiac disease is because you aren't completely intolerant to gluten. The celiac and dermatitis herpetiformis genes are both on the same chronometer. Dermatitis herpetoformus reacts to gluten even if there's a small amount of cross contamination while celiac gene may be able to tolerate...
    4. trents
      - trents replied to Leslie Clark's topic in Gluten-Free Foods, Products, Shopping & Medications
      20

      Hidden Gluten in distilled vinegar

      @Mynx, you say, "The reason this is believed is because the gluten protein molecule is too big to pass through the distillation process. Unfortunately, the liquid ie vinegar is cross contaminated because the gluten protein had been in the liquid prior to distillation process." I guess I misunderstand what you are trying to say but the statements in those...
    5. Mynx
      - Mynx replied to Leslie Clark's topic in Gluten-Free Foods, Products, Shopping & Medications
      20

      Hidden Gluten in distilled vinegar

      It isn't a conjecture. I have gotten glitened from having some distilled white vinegar as a test. When I talked to some of my scientists friends, they confirmed that for a mall percentage of people, distilled white vinegar is a problem. The cross contamination isn't from wheat glue in a cask. While yhe gluten protein is too large to pass through the distillation...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,875
    • Most Online (within 30 mins)
      7,748
    Charli.stoz09
    Newest Member
    Charli.stoz09
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Hidden Gluten in distilled vinegar

      By trents · Posted

      Take it easy! I was just prompting you for some clarification.  In the distillation process, the liquid is boiled and the vapor descends up a tube and condenses into another container as it cools. What people are saying is that the gluten molecules are too large and heavy to travel up with the vapor and so get left behind in the original liquid solution. Therefore, the condensate should be free of gluten, no matter if there was gluten in the original solution. The explanation contained in the second sentence I quoted from your post would not seem to square with the physics of the distillation process. Unless, that is, I misunderstood what you were trying to explain.
    • Mynx
      Hidden Gluten in distilled vinegar

      By Mynx · Posted

      No they do not contradict each other. Just like frying oil can be cross contaminated even though the oil doesn't contain the luten protein. The same is the same for a distilled vinegar or spirit which originally came from a gluten source. Just because you don't understand, doesn't mean you can tell me that my sentences contradict each other. Do you have a PhD in biochemistry or friends that do and access to a lab?  If not, saying you don't understand is one thing anything else can be dangerous to others. 
    • Mynx
      Hidden Gluten in distilled vinegar

      By Mynx · Posted

      The reason that it triggers your dermatitis herpetiformis but not your celiac disease is because you aren't completely intolerant to gluten. The celiac and dermatitis herpetiformis genes are both on the same chronometer. Dermatitis herpetoformus reacts to gluten even if there's a small amount of cross contamination while celiac gene may be able to tolerate a some gluten or cross contamination. It just depends on the sensitivity of the gene. 
    • trents
      Hidden Gluten in distilled vinegar

      By trents · Posted

      @Mynx, you say, "The reason this is believed is because the gluten protein molecule is too big to pass through the distillation process. Unfortunately, the liquid ie vinegar is cross contaminated because the gluten protein had been in the liquid prior to distillation process." I guess I misunderstand what you are trying to say but the statements in those two sentences seem to contradict one another.
    • Mynx
      Hidden Gluten in distilled vinegar

      By Mynx · Posted

      It isn't a conjecture. I have gotten glitened from having some distilled white vinegar as a test. When I talked to some of my scientists friends, they confirmed that for a mall percentage of people, distilled white vinegar is a problem. The cross contamination isn't from wheat glue in a cask. While yhe gluten protein is too large to pass through the distillation process, after the distillation process, the vinegar is still cross contaminated. Please don't dismiss or disregard the small group of people who are 100^ gluten intolerant by saying things are conjecture. Just because you haven't done thr research or aren't as sensitive to gluten doesn't mean that everyone is like you. 
×
×
  • Create New...