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Confused About Test Results!

allistar77

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allistar77 Newbie
allistar77
Posted

Hello. I am a few weeks shy of turning 27. I have had stomach issues since I can remember. I have had an endoscopy performed years ago to check for ulcers, it was negative and I was put on nexium (which did nothing). I have also been told I have IBS from time to time. About 10 years ago I tried to donate blood and was told no - I was anemic. I am always tired, no matter how much I exercise or how well I eat. My main problem is TERRIBLE discomfort after I eat - MAJOR bloating and all that good stuff! Anyhow, I just moved to Houston and decided to find a PCP and get a physical. I told him my history and how I feel sick 9/10 times after I eat. He mentioned celiac disease, first time I'd heard of it and suggested we run a test. My results showed a "weak positive" for the IaG antibody. It also showed that I am still anemic. I have an appointment with a gastro. in 2 weeks. But, I am MEGA stressing b/c this is all foreign to me - I need some advice b/c 2 weeks is a lot of time to wait and all this googling is taking a toll ;) . Does the weak positive, along with my constant abdominal discomfort mean that I probably do have Celiacs? If anyone has a chance, please let me know! Thanks so much.

Allison S.

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tarnalberry Community Regular
tarnalberry
Posted

A positive is a positive. Your immune system is producing antibodies to gluten - which is what gluten intolerance is. If you're looking for a full on celiac diagnosis, you may need a biopsy, as celiac specifically tends to refer to the damage in the intestines (or inferred damage based on blood test results) caused by the gluten intolerance. The question is: does the gluten-free diet help your symptoms? (Probably not a question you can answer until yoiu see the GI and determine if you'll do any further diagnostic testing that isn't the diet.)

allistar77 Newbie
allistar77
Posted
  • Author

Thank you Tiffany. I guess I just have to be patient and see what the gastro. says in a couple of weeks. I just keep reading so much about it and I am freaking out a bit...this all came out of left field :blink: All I can do now is hope for the best.

billfl Newbie
billfl
Posted

Please don't "freak out". The good news is that you already have the answer to your problem, and the solution is simply a gluten-free diet. No medicine side effects to deal with! My celiac disease was missed by 5 (five) doctors....thanks to forums like this, I self diagnosed, and my problems are resolving.

maxwell1200 Apprentice
maxwell1200
Posted

I am new here also and it is so relieving to hear that I am not alone. I share all of your symptoms. The bloating, the IB diagnoses, the getting sick after you eat 9/10 times. My PCP is the one who caught the celiac disease. She has been treating me for IB, sent me to a gastro specialist who put me on more Rx's. 10 years later I now know the cause. YEA!!! But now am stressing because I have to change my diet and don't even know where to begin. (I got the test results in this morning saying I was positive for celiac disease)

Just wanted to let you know you are not alone!! That is something that I am just now figuring out.

Good Luck!

burdee Enthusiast
burdee
Posted

Maxwell: Anxiety (STRESS) = Degree of Unknown X Degree of Importance. It's very important that you eliminate all sources of gluten from your diet. But you can greatly reduce the degree of unknowns by learning which foods naturally contain gluten (wheat, barley, rye and oats by contamination) and which ingredients contain gluten by referring to the safe and unsafe (gluten containing) lists on this and other celiac websites. Learning which ingredients contain wheat/gluten will help you to interpret food product labels. Then go through your pantry/refrigerator to examine everything you eat which may naturally contain gluten or have gluten containing ingredients. Rather than eliminate all your favorites, look for gluten free substitutes. There are MANY other grains (besides wheat, barley, oats and rye) which are naturally gluten-free. There are many companies which produce great gluten-free breads, pastas and pastries. There are many brands of condiments and/or processed foods which make gluten-free versions of those foods. If you think SUBSTITUTE, not ELIMINATE, that will make you feel less deprived at first. Many celiacs recommend eating only naturally safe foods like fresh vegies, fruits, meats and rice. I feared a sense of deprivation which would make me 'cheat' more than I feared gluten contamination, so I focussed on gluten-free substitutes at first. After I had to also eliminate dairy and soy, my safe foods did include a LOT of fresh meats, vegies and fruits, and nuts, but I still have my gluten-free favorite breads and cookies. :D Good luck!

BURDEE

num1habsfan Rising Star
num1habsfan
Posted
Please don't "freak out". The good news is that you already have the answer to your problem, and the solution is simply a gluten-free diet. No medicine side effects to deal with! My celiac disease was missed by 5 (five) doctors....thanks to forums like this, I self diagnosed, and my problems are resolving.

yeah, I totally agree! For me, the local docs said celiac disease...the one specialist said nothing..the other specialist said IBS..

endoscopy=negative..colonoscopy=negative..bloodtest=negative.

Self diagnosis was the only way I knew I had celiac disease. Plus, I was on the diet way before I had any tests done. Since all the tests check for your reaction to gluten, obviously I couldnt have a reaction if I have no gluten in me :P

So be glad you found out as quick as you did!

~lisa~

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    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
    • Jsingh
      Son's legs shaking

      By Jsingh · Posted

      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
      Son's legs shaking

      By lizzie42 · Posted

      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
      Bob red mill gluten free oats

      By trents · Posted

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