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Need Help Figuring This Out
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16 posts in this topic

Hi, I am brand new here and hoping that some of you might be able to help me out with what to do. So my backstory. I've never had any troubles with food growing up. I've always been slightly underweight, but so is my grandmother and I look a lot like her.

In October, I was training for a half marathon and after a ten mile run, I was just wiped out like never before and my stomach didn't feel right. Not uncommon for a long run, but it felt different. And it never went back to normal. I had days where I felt totally fine, I had days where I felt just bloated, gassy, and like my digestive system wasn't working right, and then I also had a few days that I was stuck on the couch all day, utterly exhausted with no appetite.

I had a bunch of blood draws, stool sample testing, and an X-ray of my belly. No diagnosis. I saw a chiropractor and got more X-rays with no diagnosis. I asked to be tested for celiac and the blood draw came back negative. I had finally decided that it was all just stress and was about to go in and ask about anti anxiety meds, but I decided to first try an elimination diet. I'm currently on day three of cutting gluten and dairy (mostly successful except a few very sneaky things). I'm an emotional wreck, thinking about all the possibilities and the very real idea that I may never eat those foods again or be able to eat out with friends in our small town.

I have two young boys and I'm not sure if I sold force them into a gluten-free diet or even if I should be trying that yet without a diagnosis.

Any help would be greatly appreciated and maybe get me to stop crying.

Update: here are the test results.

Immunoglobulin A, S 172. Ref range: 61-356 mg/dL

I have no idea what this means.

Edited by Bbec
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Welcome!

First I would like to ask if you were tested adequately/ properly? This is the full panel for Celiac Disease:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

If you do not have your test results, get them from your doctor and post them here. That's a start.

Celiac often requires a trigger and the stress of competition could be likely. It could be possible that you may have Non Celiac-Gluten Intolerance. There is not current test for that, other than perhaps a positive dietary response. Do you have a family history of digestive issues or other things?

And should you, in fact, have Celiac Disease....it's far better than any alternative that I can think of. :) A resolve through diet change. I have been doing it for eight years and I do not feel deprived in any manner. But it is an adjustment initially. That we can help you with. ;)

No need to bother you boys until you know what you're dealing with.

Hang in there and try to get some answers. You've found a great place.

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Thank you. I will call my clinic tomorrow and figure out what they tested. In the meantime, should I be avoiding gluten or should I try keeping it in my diet in case there is need for more testing. I have been attempting to keep gluten and dairy out of my diet for three days now.

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Thank you. I will call my clinic tomorrow and figure out what they tested. In the meantime, should I be avoiding gluten or should I try keeping it in my diet in case there is need for more testing. I have been attempting to keep gluten and dairy out of my diet for three days now.

Yes, you should keep gluten in your diet until you are certain that all testing is completed.

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Thank you. I will call my clinic tomorrow and figure out what they tested. In the meantime, should I be avoiding gluten or should I try keeping it in my diet in case there is need for more testing. I have been attempting to keep gluten and dairy out of my diet for three days now.

Yup, as Mushroon said...stay on a full gluten diet as much as possible (or at least a piece of toast a day), in order to test as accurate as possible.

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Updated post with test results. Immunoglobulin A, S value 172

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Updated post with test results. Immunoglobulin A, S value 172

This is basically useless, on its own. If this represents "total" IgA, it is normal. But where are the celiac tests?

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This is basically useless, on its own. If this represents "total" IgA, it is normal. But where are the celiac tests?

I don't know. Apparently that's all that was tested. The notes say that celiac is unlikely but that 10% of people will show a false negative. It says "if celiac is highly clinically suspected, consider HLA-DQ typing." Thanks mayo clinic?

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I believe you need to go to the office and demand that they give you a copy of the results they got back from the lab. There must be more than that. What about the list in Lisa's post #2??

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I believe you need to go to the office and demand that they give you a copy of the results they got back from the lab. There must be more than that. What about the list in Lisa's post #2??

That is exactly what I have. It is the lab results sent to my clinic from Mayo clinic where the test was completed. The quote I put in #8 is what was written in the comments section on the results.

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Hi,

I suggest you keep on the regular gluteney diet for now. Your test results are not completed, perhaps they didn't do them all or they just didn't give you all the information. IF you do need to go gluten-free, don't be too concerned about it. The biggest challenge is usually just getting started and learning how to eat right. People learn new things all the time and that is just one more thing to learn. There are lots of gluten-free alternatives available now for most an food you can think of. And the gluten-free diet is healthy diet for people to follow anyway.

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Sometimes when they take blood they store extra incase you decide to do other tests. Check with the lab.

Diana

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What we were looking for is the actual results relating to celiac, not the comments. :)

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What we were looking for is the actual results relating to celiac, not the comments. :)

That's all there was. The 172, the reference range, and the comments.

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Tthese tests that Lisa posted are what you need:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

It would appear that they did only the last one.

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My doctor finally returned my call and I told him all these values that my test should have yielded. He said he would talk to the pathologist about it. Did everyone have these initial tests done by their reg doctor or a gastroenterologist? I'm wondering if I. Should just ask for a referral to one.

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    • I_would_widen_the_search_to_your_whole_environment.....Carefully_consider_what_else_was_different_when_you_felt_better.
    • Thanks a lot for your advice and the link. I will surely check upon GCED. But, doesn't a negative HTTG (can't do IgA ttg as IgA deficiency) result mean that I am not exposed to gluten ? 
    • Thank you for going through my long post and responding. I have been both dairy and gluten-free free for 10 months now. Yes, even I was worried about other food allergies. I mentioned it to my GI doc and asked if I need food allergy test to eliminate other allergens. He said, food allergy tests give a lot of false positives and are not accurate. He said: not everything is because of food allergy and it's refractory celiac which is causing issues as the jejunum biopsy, done recently, is showing villous flattening.

      My doubt: 1. If I have so much damage in my small intestine (villous flattening) then how was I keeping fine for 6-7 months ( eating eggs, soy, rice and meat) - was constantly losing weight though - but was able to work out regularly - not much fatigue. 2. If it is other food allergens ( out of mentioned allergens, I take eggs, soy chunks, almonds only) why does it happen only few times and not always - I keep well for 7-8 days and then fall sick again - this without any change in diet.  
    • Oh, Trish at the GlutenFreeWatchDog tested Planter's honey roasted peanuts three years ago.  The can did not state gluten-free, but showed no gluten ingrediants (per Kraft policy).  Test result: less than 5 part per million which is pretty much gluten-free.  
    • What if it were something else that glutened you?  Maybe you ate too much of a good thing?  I once (three months post dx) ate too much gluten-free fried chicken, vomited, passed out and fractured my back (osteoporosis) in the process.  Paramedics, ER doc and Cardio all thought I was having a heart attack.   No.  It was sheer gluttony and bad bones.  Not good to overload with a damaged gut.    Maybe you did get some contaminated nuts.  Afterall, anything processed is suspect.  What might be well tolerated by some, might be too much for others.  We all have our various levels of gluten intolerance.   The old 20 parts per million is just a guideline, but science does not really know (lack of funding......doe anyone really care enough to find out?)  My hubby has been gluten-free for 15 years.  When I was first diagnosed, I tried to eat the gluten-free foods that I normally gave him.   Problem was he was healed and I was not.  Things like Xanthan Gum in commercial processed gluten-free breads make me feel like I have been glutened, but it is just (and still is) an intolerance.  So no bread for me unless I make it myself using a different gum.   Too lazy, so I do without.   so, ask your doctor if you really want to know or lay off the cashews and test them again in a month using a certified gluten-free nut.  I wish this was easier!    
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