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

Help- Greatly Appreciated


PETES

Recommended Posts

PETES Newbie

Hi. I would be grateful if anyone could help me. Do these symptoms sound like sprue? I have constant burping, acid reflux, abdominal bloating, tons of gas, rectal itching, dry eyes(blepharitis), and sport injuries that never seem to heal.

I have been told that I have a small hiatus hernia but that it should not be giving me these symptoms.

I have had tests that show my stomach may empty too slow yet drugs to improve this have not made a difference.

I had a colonoscopy which showed inflamation at terminal ileum(possible crohns) yet crohns drugs have not made a difference and my symptoms don't sound like crohns

Had celiac bloodwork and a biopsy which were all negative.

Decided to do enterolabs testing and it showed that I am gluten intolerant, have small intestinal malabsorption, and have the gene for sprue.

Could I have sprue or is this test quackery? My GI told me to throw the results in the garbage. If I go gluten free, how long would it take to know for sure?

I greatly appreciate any opinions. What a great site.

Thanks,

Pete


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



Celiac.com Sponsor (A8-M):



DLayman Apprentice

I would not throw those results in the trash.. I would advise you to try a gluten free diet for at least six weeks. It will not hurt you. If the symptoms go away then you probably have a gluten intolerance. People can have gluten intolerance without having celiac.

If you have the gene for it then it is possible you have but it is just as possible not to have it from my understanding.

Also you may want to try the specific carbohydrate diet. It is a gluten free diet and a little bit more..

see www.breakingtheviciouscycle.info and www.pecanbread.com also www.scdrecipe.com there should be enough recipes/guidelines there for you to work out a six week menu to stick to..for a trial. The big thing is NO CHEATING!!! you would want to really commit to this for at least 6 weeks to give it a full trial..

Good luck.

Guest LisaB

Yep, that is great advice, listen to your body not anyone else....it will tell you!

Lisa

Guest jhmom

Pete:

I can tell you I would NOT throw those results from enterolab in the trash. Let me tell you why, in August 2002 I became very ill. I was so sick I thought something was seriously wrong with me. I went to the doctor and got a referral to a GASTRO. When I visited him he thought I had IBS, I underwent numerous tests/procedures which all turned out ok. After I lost 40lbs he finally tested me for Celiac and Crohn's, they both came back negative. After finding out about Celiac Disease I begged him to perform an endoscopy, the results showed "patchy inflammation". Even with these results he still dismissed Celiac and stuck to IBS. I would not accept this and wanted some answers.

I finally got sick and tired of feeling sick, tired and being in pain and decided to order the test from enterolab. THe results were positive and I immediately started a gluten-free diet. I never bothered to tell my doc about my results I just accepted my results and moved on.

I have been gluten-free for over 3 months and feel better than I have in a long time and could tell a difference within a few days. I still have moments here and there but nothing like the pain I was experiencing on a daily basis. :)

PETES Newbie

Thanks so much for the replies. Does anyone with Sprue share my symptoms?

Thanks

Guest TESTinME

I've got frequent burping too and it is really frusterating (counted 40 times today so far). I bet mine is a hiatal hernia too.

You can have your stomache adjusted to push it back down where it belongs:

Open Original Shared Link

Open Original Shared Link

I've been celiac longer then having these symptoms. When I first went gluten-free I was fine, I don't think my symptoms are related.

wclemens Newbie

I want to add my accolades to the others about Enterolab. My newborn grandson suffered horrible reactions after starting milk formula (stomach distress, severe diarrhea and diaper rash, vomiting, etc.). We notified his doctor, who switched him to soy, then I ordered the Enterolab full spectrum of tests, and we avoided introducing wheat or grains while waiting for the results. He tested gluten sensitive, carries a copy of the gene for Celiac, and is allergic to all milk and dairy products.

I've had Celiac symptoms for the past 51 years, and only by going on the Celiac diet was I able to finally heal and truly live life to the fullest. I am grateful that my grandson will never have to experience the negative effects that we all have with the disease. Welda


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



Celiac.com Sponsor (A8-M):



tammy Community Regular

Hello,

I have gluten sensitivity and a dairy allergy to go along with hypothyroid and low progesterone to name a few. But here's the thing, my nutritionist suspected the gluten sensitivity (not celiac) and dairy allergy without testing me! So I went and had bloodwork that came back negative, except no one told me that I should be eating gluten when being tested! So I continued to search for a non-invasive test and chose Enterolab. It came back positive for gluten sensitivity and dairy allergy. I used the stool test, and gene test. I do not have celiac yet I have two copies of one of the necessary genes for celiac. Anyway I must live a gluten-free/dairy-free lifestyle. Oddly enough, I can get by with no noticeable side effects when I cook with butter. I can use very small amounts of dairy 3 times a week. But I have constipation and mild wheezing when I go above that standard.

I suspect that since I am dually diagnosed with gluten/dairy and thyroid that my immune system has a much heavier load than those with a single diagnosis, celiac/gluten sensitive. My symptoms are numerous and I am much stronger now then 2 years ago. I still have daily fatigue, bruise easily, heal slowly, periodic constipation, lower leg aches, and the general side effects of my dairy cheating. I still require a minimum of 8-9 hours of sleep to function properly at my two jobs. However, I used to need 12 hours of sleep daily. This is a general synopsis but...

I hope it helps.

Tammy

  • 1 year later...
Guest mudders4

Hello, I read so many of your stories and we all sound so alike. I have pretty much been my own doctor. I am hoping some of you can help me. I have lost all mt teeth at 35, I have low cholestrol, chronis iron anemia, I have to have infusions to replace my iron, constant itching everywhere, Yeast infections every other month. Please someone tell me you have been here.. I also had blood work done and was slightly postive. My biopsy was negative. I am going to do testing with Enterolab. Are they reliable. I appreicate any information.

Thank you

Vicki

judy05 Apprentice

Mudders,

I've had a lot of your symptoms and more. I had to have my teeth

capped in high school, severe allergies, burning, itching eyes,

aches and pains, GI symptoms, heartburn, constipation, thyroid

disease, I could go on and on. I too had one positive blood test,

negative biopsy, negative on gene test. I know I have gluten

sensitivity but GI thinks I can go back on gluten and dairy.

Fat chance, I will never allow myself to be that sick again.

Try the diet you will feel so much better, it took me about a

year to really feel better but I was sick for a long time.

  • 2 weeks later...
Lesliean Apprentice

You asked if anyone has your symptoms. I did! Went to the md with reflux problems. Burging into my esophagus, pain in the stomach, bloating, itching becuase of the constipation and soreness inside, bleeding...Yuck. Within 4 weeks gluten-free and Dairyfree it all magically went away.

Archived

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

  • 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. - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    2. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    3. - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

    4. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

    5. - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,858
    • Most Online (within 30 mins)
      7,748

    Beckyq
    Newest Member
    Beckyq
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Jsingh
      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
×
×
  • 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.