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Ordered Test

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confused Community Regular
confused
Posted

Thank you all for your help in deciding what was best for my stepson. I decided to order the enterolab test. I do not want him to suffer anymore, i cant see him going 8 more weeks on gluten. I do feel that at least these results will be good enough for him. I am also hoping they will be enough for school, if not then i will just pack all his lunches and take extra snack stuff at school if they have parties, which they dont have that many in high school anyway..

His dad and I figured if he wants to challenge it later on in life when he is an adult then he can, but for now we know this is the best thing for him.

So i just wanted to tell you all thank you for your responses the last few weeks in helping me figure out what is best for him.

paula

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Lisa Mentor
Lisa
Posted

Paula:

I know you and your husband have put a lot of thought into this decision. I think it's a wise one. There is no sense in your son being miserable with falling grades.

He's young and he need to be out enjoying his friends :)

JennyC Enthusiast
JennyC
Posted

What are entero tests? :huh: I don't want my son to get a biopsy. He's already had the blood work done.

Thanks.

missyf Newbie
missyf
Posted
Paula:

I know you and your husband have put a lot of thought into this decision. I think it's a wise one. There is no sense in your son being miserable with falling grades.

He's young and he need to be out enjoying his friends :)

missyf Newbie
missyf
Posted

Wow, this is confusing. I was diagnosed with Celiac a 18 months ago. What is this test? How do you get one? I think that I might be allergic to other things. I have been on the diet for 17 months and I am extremely sensitive. I still have episodes at least 3 times a month. They seem to last for days. I have resorted to eating only veggies, fruits, meat, and potatos. I don't know what else to do. Symptoms are still terrible stomach aches (want to go to hospital most times) and D or Const. I also have lower back pain and numbness in my arms, hands, and feet. My gastro doc says that he doesn't have any other answers or test that he can do. I have positive scopes and last one in Dec 06 was better than the others. He told me on the last visit that there is no need for me to see him anymore. Basically, I have it and the diet isn't totally helping symptoms. I am very careful. :blink: Anyone else have similar situation?

Lisa Mentor
Lisa
Posted

I don't have the website for enterolab, but there is a bounty of information here about the test.

Do a search, here

jerseyangel Proficient
jerseyangel
Posted

Here is the link to Enterolab--

Open Original Shared Link

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JennyC Enthusiast
JennyC
Posted

Thanks for the link. I'm interested in the tests, and am surprised by how affordable they are. (About half the price of a full blood work up.)

confused Community Regular
confused
Posted
  • Author
Paula:

I know you and your husband have put a lot of thought into this decision. I think it's a wise one. There is no sense in your son being miserable with falling grades.

He's young and he need to be out enjoying his friends :)

Thank you momma goose, it was really funny once i hit the submit button i felt like a big sigh of relief, i really felt i did the right decision for him. I cant wait to talk to him when he gets home tonight. I am going to let him choose to start back on the gluten free diet tonight or wait til he goes to a big birthday party on saturday.

paula

confused Community Regular
confused
Posted
  • Author

Just wanted to update. Last night when he came home from wrestling we gave him an option, to quit gluten now, or wait til he went to a big party on saturday. Much to my belief he said he wanted to quit now. He had an regular sandwhich at lunch and he said he had sharp stabbing pains during his reading class, and he said he never ever wants to eat gluten again. Then i told him he would be doing the stool test and he said good, then i wont have to see another doctor or give any more blood anytime soon, and we said no. He was so happy. He also said he will never cheat on again, it isnt worth the pain.

I am so proud of him. and who said teenagers dont know anything lol

paula

jerseyangel Proficient
jerseyangel
Posted

Paula,

I just want to say that I think you have a very sensible son there :D

Keep us posted, please, on his progress.

NoGluGirl Contributor
NoGluGirl
Posted
Wow, this is confusing. I was diagnosed with Celiac a 18 months ago. What is this test? How do you get one? I think that I might be allergic to other things. I have been on the diet for 17 months and I am extremely sensitive. I still have episodes at least 3 times a month. They seem to last for days. I have resorted to eating only veggies, fruits, meat, and potatos. I don't know what else to do. Symptoms are still terrible stomach aches (want to go to hospital most times) and D or Const. I also have lower back pain and numbness in my arms, hands, and feet. My gastro doc says that he doesn't have any other answers or test that he can do. I have positive scopes and last one in Dec 06 was better than the others. He told me on the last visit that there is no need for me to see him anymore. Basically, I have it and the diet isn't totally helping symptoms. I am very careful. :blink: Anyone else have similar situation?

Dear missyf,

I have had similar problems. It is awful. I was doing a lot better the first two months, then I started to feel as bad as before. I stopped eating the dairy again, and that has helped. However, I may have other issues. There is a possibility I have Lyme, Babesia, Leaky-Gut, Bacterial Dysbiosis, plus maybe more food intolerances. I also had my gallbladder out several years ago, and my body does not tolerate any form of oil. I could have Post Cholecystolic Syndrome. :(

As for the Enterolab, it does identify other problem foods. I have not been able to get it done yet. I do not have insurance. I will do it as soon as I can, though! The entire work up is a stool test for antibodies for Celiac, gluten intolerance, casein, soy, and eggs. Plus, they test you for the Celiac genes and gluten intolerance genes. The entire thing costs about $380.

Dear Paula,

I am so glad you stepson is coming around! The misery this disease causes is too much. Even a slight amount makes me violently ill. Cheating is not tempting at all for me! I miss the food, but not enough to damage my intestines for it. Alas, poison is sweet and medicine bitter.

Sincerely,

NoGluGirl

kookaburra Rookie
kookaburra
Posted
Wow, this is confusing. I was diagnosed with Celiac a 18 months ago. What is this test? How do you get one? I think that I might be allergic to other things. I have been on the diet for 17 months and I am extremely sensitive. I still have episodes at least 3 times a month. They seem to last for days. I have resorted to eating only veggies, fruits, meat, and potatos. I don't know what else to do. Symptoms are still terrible stomach aches (want to go to hospital most times) and D or Const. I also have lower back pain and numbness in my arms, hands, and feet. My gastro doc says that he doesn't have any other answers or test that he can do. I have positive scopes and last one in Dec 06 was better than the others. He told me on the last visit that there is no need for me to see him anymore. Basically, I have it and the diet isn't totally helping symptoms. I am very careful. :blink: Anyone else have similar situation?

My son was treated with diflucan (for yeast) and this helped a lot.

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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