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Confused About Test Results; No Treatment Options. Left Confused!

KnightRobby

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KnightRobby Enthusiast
KnightRobby
Posted

After months of tests, including HIDA scan, blood work, small bowel series, etc I have left my supposed "Celiac Doctor" (my GI) and I am looking for a second opinion.  I am totally confused by my results.  My GI told me it could be Crohn's, it could be IBS, and even said, "It could be anything!"  He gave me a pamphlet and that is it.  He hasn't told me that he is going to treat my pain left abdomen, which also feels like it is have muscle spasms (I am thinking spastic Colon).

 

I have questions about my blood work.  My initial Celiac panel was 138/20 and was very high (from what I understand).

 

A month later I had my tTG IGA tested again but it was: 52/20 (as opposed to 138/20)  Was this because I was eating gluten free the second time?  And if I was eating Gluten free, should that number be below 20?

 

Also, I had my Glaidin Peptide IGA checked, which was: 51.70/20  I have only done a little research on this and don't know much about it.  But with this number he said "possible Crohn's."

 

I've had a colonosocpy and endo done, which came back for:

- A scattered area of erthyematous mucosa was found in the sigmoid colon and in the descending colon.  It was biopsied but they couldn't find anything (could this be from eating Gluten free?  I was eating gluten free at the time).

- Non-bleeding internal hemorrhoids were found during retroflexion and were moderate. 

 

- I have also developed new food allergies very suddenly.

 

I am wondering if it is nerve damage to my colon due to laxatives and pain killers.  I am having every symptom, including malnutrition and signficant weight loss/constipation and pain right in my left abdomen (colon) region: Open Original Shared Link

 

At this time I am seeking a second opinion but a lot of these doctors on my insurance have been horrible all around.  At this point, I really don't know how to proceed.  I'd like to do all natural diet.

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gatita Enthusiast
gatita
Posted

I hear you about confusing tests!

 

So if I understand correctly, the baseline for normal on your ttg is 20? In that case it makes sense that your number went down after going gluten-free, and I'm told it can take a while to get to normal, so one month may not be enough.

 

The sigmoid and descending colon aren't affected by celiac (that damage is in the small intestine), so a negative biopsy there might not be related to going gluten-free -- although some people do believe going gluten-free also helps conditions like Crohns and ulcerative colitis.

 

Sounds like a second opinion is in order. "It could be Crohn's" is not helpful at all!

 

Have you gotten any relief when you went gluten-free?

mushroom Proficient
mushroom
Posted

You didn't mention any biopsies from the small intestine.  Were none taken?  If not this was a mistake, because celiac disease usually is not seen with the naked eye -- you need the biopsy and the microscope.

 

You need to get copies of all your test results from your (former) GI and see for yourself what they say and don't say.

 

Any time you are gluten free, celiac testing is totally unreliable.  You go gluten free to cure celiac disease, so it is expected that your condition will improve gluten free.  Even so, it appears you were still out of range.  But you need to find out these results for yourself, and if you would like, post them on here so we can feel free to comment on them :P   And criticise :D

 

Weight loss, constipation and malnutrition are also known symptoms of celiac disease (along with about 197 other symptoms, some of which I recall you also have). 

RyeSnake Newbie
RyeSnake
Posted

Right on there Mushroon.  I would also say biopsy is the way to go. My blood test was borderline but my biopsy told the true story for me. When first went to see my GI doctor I was 120 lbs from 150. Now I'm at 165 for 10 years now.  My family doctor dismissed everything as pretty much in my head and even my thyroid blood levels they thought was fine. Blood test and biopsy confirmed mine from my GI doctor. Also deveolped barrett's esophagus from the indigestion but a endoscopy will tell you this also if you have it.

 

Rye

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
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