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 Celiac.com!
    eNewsletter
    Donate

Is More Testing Needed? Useful?


SoMuchPaint

Recommended Posts

SoMuchPaint Newbie

Here are my enterolab test results:

A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value

Fecal Anti-gliadin IgA: 21 Units

Fecal Anti-tissue Transglutaminase IgA: 11 Units

Quantitative Microscopic Fecal Fat Score: 524 Units

Fecal Anti-casein (cow's milk) IgA: 3 Units

HLA-DQB1 Molecular analysis, Allele 1: 0301

HLA-DQB1 Molecular analysis, Allele 2: 0501

Serologic equivalent: HLA-DQ 3,1 (Subtype 7,5)

Interpretation of Fecal Anti-gliadin IgA (Normal Range is less than 10 Units): Intestinal antigliadin IgA antibody was elevated, indicating that you have active dietary gluten sensitivity. For optimal health, resolution of symptoms (if you have them), and prevention of small intestinal damage and malnutrition, osteoporosis, and damage to other tissues (like nerves, brain, joints, muscles, thyroid, pancreas, other glands, skin, liver, spleen, among others), it is recommended that you follow a strict and permanent gluten free diet. As gluten sensitivity is a genetic syndrome, you may want to have your relatives screened as well.

Interpretation of Fecal Anti-tissue Transglutaminase IgA (Normal Range is less than 10 Units): You have an autoimmune reaction to the human enzyme tissue transglutaminase, secondary to dietary gluten sensitivity.

Interpretation of Quantitative Microscopic Fecal Fat Score (Normal Range is less than 300 Units): A fecal fat score greater than or equal to 300 Units indicates there is an increased amount of dietary fat in the stool which usually is due to gluten-induced small intestinal malabsorption/damage when associated with gluten sensitivity. Values between 300-600 Units are mild elevations, 600-1000 Units moderate elevations, and values greater than 1000 Units are severe elevations. Any elevated fecal fat value should be rechecked in one year after treatment to ensure that it does not persist because chronic fat malabsorption is associated with osteoporosis among other nutritional deficiency syndromes.

Interpretation of Fecal Anti-casein (cow's milk) IgA (Normal Range is less than 10 Units): Levels of fecal IgA antibody to a food antigen greater than or equal to 10 are indicative of an immune reaction, and hence immunologic "sensitivity" to that food. For any elevated fecal antibody level, it is recommended to remove that food from your diet. Values less than 10 indicate there currently is minimal or no reaction to that food and hence, no direct evidence of food sensitivity to that specific food. However, because 1 in 500 people cannot make IgA at all, and rarely, some people can still have clinically significant reactions to a food antigen despite the lack of a significant antibody reaction (because the reactions primarily involve T cells), if you have an immune syndrome or symptoms associated with food sensitivity, it is recommended that you try a strict removal of suspect foods from your diet for up to 12 months despite a negative test.

Interpretation Of HLA-DQ Testing: Although you do not possess the main HLA-DQB1 genes predisposing to celiac sprue (HLA-DQB1*0201 or HLA-DQB1*0302), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (any DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by HLA-DQB1*0302). Having two copies of a gluten sensitive gene means that each of your parents and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



SoMuchPaint Newbie

History:

I have no gastroenterologist. Looking back, I have had digestive complaints for years and years, feeling gassy/bloated/uncomfortable with alternating d & c for so long that I considered it normal for me and I attributed it to not enough veggies or nervousness, depending on the symptoms.

I also have an (undocumented) history of reaction to foods and additivies. As a child, I went literally crazy when given Flintstone vitamins, loaded with so much food coloring that, when my mom made the connection and flushed them, the toilet water turned vibrant. Eating candy like skittles or drinking soda would give me such a high that I never felt the need to experiment with alcohol or illegals. A good student (although terribly disorganized) throughout grade school, by college I was diagnosed with adult ADD and took Ritalin in order to maintain the focus needed to study for organic chemistry. I abandoned the Ritalin when I started seriously considering what it would be like to drive off this particular bridge I drove across on the way home from my college commute, and realized there might be a connection (so I am obviously drug sensitive).

Still, my fuzzy-headedness and distractability grew worse and worse, until I ended up dropping out of graduate school, even with all my classes completed and an excellent GPA, because I couldn't write up my thesis (whose research I had already completed and whose data I had already analyzed).

I hemorrhaged after the birth of my first child (did not need transfusion, just injections and IV fluids and pitocin to stop bleeding). As the OB gave me a few stitches after the labor, I learned that whatever local anesthesia she used was useless to me. One year later, still exhausted and useless at home -- taking care of my daughter took everything I had, and I don't think I washed a single dish or sock that whole first year -- I was diagnosed with hypothyroid and started Synthroid.

Almost 3 years later, immediately after the birth of my second child, I developed stiffness and swelling in my joints, first in my right hand (where a badly placed IV saline lock during the labor started the pain), then in my left hand as well (leading me to believe it was rheumatoid, because of the symmetry). When I went to a doctor (3/4 of a year later, when I started dropping things and was worried I wouldn't be able to take care of my baby) she recommended taking large doses of motrin for a few months, and then scheduling surgery if I was still in pain. I said no, thank you. I went instead to chinese medicine, and used acupressure. Through the acupressure, avoiding corn to the best of my ability (something I read on the internet), and switching from Synthroid to Armour (on the advise of the acupressurist, seeing the naturopath/MD he recommended), within a year my hands were functioning and mostly pain free.

Naturopath/MD did testing, and the thyroid condition was definately Hashimoto's (autoimmune). He also put me on digestive enzymes, probiotics, and some supplements that would support my adrenal system (which was sluggish) and my struggling thyroid, but because I was still breastfeeding, neither doctor (acupressurist nor naturopath/MD) could do any detox on me.

When I had my wisdom teeth removed, I found I was one of the small percentage that, instead of sleeping when taking Tylenol with Codine, goes a bit crazy, pacing and crying, until the drug wore off. I endured the subsequent dry socket with clove oil.

I was weaning my youngest (2 years old) to do the detox when I got pregnant again.

And here I am now, due in January. It has been a major concern for me that this pregnancy would lead to another autoimmune condition, so I looked up everything I could find online and discovered the connection between Hashimoto's and Celiac. Not thinking I had Celiac, but seeing many of the atypical symptoms in myself and my oldest child, I had us tested.

Link to comment
Share on other sites
SoMuchPaint Newbie

I have been gluten free (to the best of my ability; I am certain I have glutenized myself as I am still new to this) for about two weeks. With the naturopath/MD's blessing, I have discontinued all supplements containing wheat, leaving me with the digestive enzyme, probiotics, and now a gluten-free prenatal.

My OB has found me to be low platelet (although not scary low) and low iron (although I take an iron supplement).

My biggest reaction to the gluten-free diet has been constipation (I have had d most of this pregnancy) and my daughter says I smile more. I have noticed a return of my sweet "mommy voice," which was getting lost in crankiness and frustration at my inability to get out of my own way. I can't really tell if my stomach feels better, because everything is all squished right now from the baby.

Now what?

Should I test to see if I am low IgA, since me fecal fat was so high given the relatively low IgA reactions?

Should I test for any other food sensitivities?

Is there any benefit to blood testing? The false positives are so high... and I don't have the most common Celiac genes, although I am having an autoimmune reaction related to ingesting gluten.

Am I better off just staying gluten free and keeping this out of my medical record as much as possible? (My insurance doesn't pay for the naturopath/MD or the acupressurist, and it didn't pay for Enterolab, so is this all outside of my medical record in regards to insurability?)

Ought I have any nutritional testing to look for deficiencies, since I'm not absorbing well?

Link to comment
Share on other sites
SoMuchPaint Newbie

Staying Gluten Free during delievery

When I go to the hospital to deliever, I will tell them I want gluten free and corn free food, but will the food service at the hospital know how to do this? Or will they just scrape the canned corn off my plate and serve my food with the bread on the side?

I know that IV's can contain dextrin (from corn), and I really don't want my arthritis to come back, so I'll need to ask for straight saline if they insist on one. Are there any other medications I will be offerred/given that they will not know has wheat or corn in them?

Sorry, I keep thinking of things to add. I have read extensively on this board and the journal articles I can find online (abstracts, mostly), but I still have so many questions, and I value your experience.

Link to comment
Share on other sites
ktnhsv Newbie

I'd do whatever the natropath suggests? I'd love to go to one myself but can't afford it.

Link to comment
Share on other sites

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. - plumbago replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    2. - trents replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    3. - Suzi374 replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    4. - Suzi374 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    5. - Peace lily posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Would like to gain weight


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,225
    • Most Online (within 30 mins)
      7,748

    jhand
    Newest Member
    jhand
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • plumbago
      I'm also a nurse, but one who has worked in chronic care, and to some extent, it is more satisfying to see patients through to a diagnosis (as opposed to working in the ED), but an accurate diagnosis does not occur not as often as it should! Your posting presents a lot of information. But a couple of things I can respond to. One, celiac disease is diagnosed by endoscopy and biopsy of the duodenum. So, pathology will need to weigh in. It's not diagnosed on gastroscopy. (At least, not as far as I know). Two, did you get blood tests for celiac disease? You will need to be eating gluten in order for those to be accurate. Three, where was the CT angiogram (of what)? I could go on and on, but thought I'd start there.
    • trents
      Was a biopsy done when you had your gastroscopy? Concerning your anemia, are you B12 deficient? It's nearly impossible to get sufficient B12 if you are a vegetarian unless you take supplements.
    • Suzi374
      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it. 
    • Suzi374
      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be better and tried a new set of probs, all the time, giving me multiple shocks which were not enjoyable lol. Anyway, he’s now ordered tests for myeloma, and all the vitaminy things that so many of you mention on here, also tests looking for autoimmune responses. I already have Hashimotos. Interestingly, to me, but maybe someone out there can relate or knows more than i do, although I was a nurse, but ED not ‘weird symptoms’  nurse. Anyway back to the interesting thing, I took duramine in 2013 to lose weight which caused a massive panic attack when I stopped taking it and half my hair fell out. I only took it for a week but it was horrible and I regret it. It triggered ongoing panic attacks which are horrendous. So I feel like I’m a bit crazy. Then in 2020 I had this sudden onset of horrible pain when trying to eat a cinnamon roll. It continued and I lost around 20 kgs. I had two gastroscopes and a colonoscopy and they were all normal. I scored a barium swallow and CT angiogram. All normal. The pain subsided a little but I was left with reflux and an awful feeling that I couldn’t get air when I ate some foods. This was not anxiety.  The anxiety was separate and I still maintain this. This was something to do with eating. It was like the air was thick but I wasn’t short of breath. I just had the sensation I was, then it triggered anxiety. Anyway, I had other weird things- couldn’t bend knees to shave legs in shower lol. Knees felt stiff and swollen but they weren’t. Knee WOUld swell up randomly but mri showed minimal issues. A bit of a meniscus degeneration but insignificant. Then the buzzing sensations in my head, the feeling like someone was stabbing me with something sharp. So now, I pre empted his tests, although I don’t think I’m celiac because it should have come up on gastroscopy, I’ve gone off gluten. Since Tuesday last week so 9 days. Since then I don’t appear to be as constipated, I realised I got through today without a nap and I’m not tired, maybe it’s just today and not related but I get very tired normally and sleep straight after work often, I can bend my knees and shave my legs lol, the buzzing vibrating has gone from my head, I had to call and ambulance as my heart decided we were off on a run, but we weren’t running and I’ve been a bit twitchy at bed time when trying to sleep, reflux is improving, I did get the weird suffocating feeling a bit when eating today but not as bad normall. Tingling and numbness still present and I felt like it moved up my legs a bit today but I’m a bit jittery. So I don’t know if it’s celiac disease or a gluten intolerance but I think, and it may be wishful thinking because my symptoms do make life a bit challenging, but maybe I’m feeling better. I don’t feel as cloudy. My thinking feels crisper. Like there’s no buzzing and I’m not fighting to break through the cloudiness now. I hope so much that this may help me feel a bit better moving forward. It would be a miracle as I really have struggled to work and parent and keep the house clean and I’m always anxious and exhausted.  If you get this far, please tell me if you you can relate to any of the above. Oh and tonsils out 5 years ago but before that antibiotics multiple times a year, sometimes intramuscular because they were so bad.  Op was meant to take 30 mins, it took 1.5 hours due to size of them. 
    • Peace lily
      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
×
×
  • Create New...