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Negative Tests But I Have All The Symptoms?

lightening16

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lightening16 Rookie
lightening16
Posted

Hi

I am totally new here but I am not sure where to go next and figured someone else would have gone through this before.

My symptoms:

lactose intolerance for two years after gall bladder surgery

gas, bloating and abdominal pains even when I don't eat lactose

mild D every day once or twice

low iron

rash on back of my neck, elbows and knees

more recently nausea and extreme tiredness

weight gain

My doctor took me very seriously and ordered blood tests to test TTG. They came back 2.9 with a normal being anything below 10.

I have stopped eating gluten for the last 4 weeks (after the blood test) and found a big improvement... my husband notices that the extreme gas is gone. I am supposed to go see a gut doctor but that may take awhile (Canadian system). Do I go back to eating wheat till I see the gut doc?

I don't want to back to where I was but I really want to know if this is celiac or something else.

Any suggestions?

Thanks

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HAK1031 Enthusiast
HAK1031
Posted

been there, done that...it's really up to you. If you have any need for an official diagnosis via endoscopy, then yes, you would need to be on gluten. You'll find that most celiacs couldn't be paid enough to intentionally eat gluten! But if you don't, consider yourself diagnosed. You know what makes you sick, stop eating it! Another option could be independent testing via enterolab, which is a stool test. It's about $150, but worth it because it's accurate even if you're gluten free. You can order a kit at enterolab.com. Good luck!

lightening16 Rookie
lightening16
Posted
  • Author

Thanks for your response. Will a GP accept the enterolab results? I know for me that I do feel better going gluten free but no one in my family will take me seriously if I do not get it confirmed. The other aspect as a mother of two little kids I want to make sure I am putting everyone through this for a good reason and if they could also inherit this problem. It seems to be taking over my life, this not knowing.

Sorry for the over explanation...

mommida Enthusiast
mommida
Posted

Trying to eat gluten again may not be as easy as it was before. I lot of people notice their reactions seem to worse than before. A piece of paper saying that you have Celiac Disease doesn't seem worth it when you are going to go through hell eating gluten and being so sick for a test.

By the way your doctor did not do a full Celiac panel, if you just had Ttg results.

thepeach80 Rookie
thepeach80
Posted

This my biggest fear! I'm going in tomorrow for my test and I know gluten is a problem. I'm hoping for a diagnosis, but I'm scared since this has been a recent problem that maybe I don't have enough damage. My son is gluten free and it's helping him so it's not a far cry to think I could have problems as well. I decided to eat gluten tonight, ugh, since I hadn't eaten it in a few days (and felt great btw) and it was hard. I almost cried eating it b/c I was afraid of how I would feel come tomorrow morning. Hopefully you'll find your answer and figure out what you need to do!

lightening16 Rookie
lightening16
Posted
  • Author

I ate wheat etc today and have had no adverse side effects so far besides some gas... we'll see tomorrow. It would have been too easy to have the tests just come back positive.

I am a total science brain and always want a straight answer.

Sounds like your whole family has issues! That would make it easier to do the whole family all at once. Over Christmas I was gluten free (on a bit of a learning curve) and it was a bit toruturous to see everyone else enjoying ALL the food. I have to say this is the first Christmas that I actually felt comfortable after dinner. I look back at my family and it appears that my grandmother must be celiac... Rheumatoid arthritis, Hypothyroidism, regularly gets "food poisoning" or a stomach bug, really gasy.

I really just stumbled on this as I was getting desperate before Christmas. I actually took two pregnancy tests in Oct and Nov because I felt so rotten and was getting nauseous. I was so bloated all the time and my clothes were always too tight in the waist. It looks to me like I have all the symptoms but am I just self diagnosing and it could be something else.

Good luck with your tests... make sure that you get all the tests done, I only had two done and apparently that is not all of them.

lightening16 Rookie
lightening16
Posted
  • Author

I didn't think that she gave me the whole test... I am assuming that the gut specialist will give me all the tests but I don't even know when my appointment is, it could be several months away. Not looking forward to feeling like I did before going gluten free. If things are worse as you say I will be bailing early for sure.

I would like to send a test off to enterolab but I am a little leary and it seems like alot of money. In the grand scheme of things though it could be worth it's weight in gold for health.

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thepeach80 Rookie
thepeach80
Posted

Are we twins? lol I forced myself to eat a piece of bread last night and nothing so far, so I ate 2 more today to see. I have my test in an hour! I think I've now decided it's just a gluten intolerance and I'm not sure how to proceed w/ that as I can obviously eat a little gluten w/ no problem, but I'm not sure at what point I get pushed over the edge. I'm very medical too and like answers, but my kids like to keep me guessing and we never get any answers from tests for them. We're doing Enterolab this month or next for my 3yo.

tarnalberry Community Regular
tarnalberry
Posted

1. your doctor did not run a full celiac panel; there are at least four other markers that he should have tested for.

2. the dietary challenge IS a valid diagnostic test, and should be taken seriously.

3. the rest of your family (outside of your immediate family) doesn't have to believe your diagnosis, they just have to accept your decision.

4. your immediate family doesn't have to go gluten free (unless they find that it makes them feel batter as well, even if you take the shared meals and family kitchen gluten free, as they can eat all the gluten they want to outside of the house. (or, for instance, we have a mostly gluten free kitchen - all cooked items are gluten free, but my husband has oatmeal, granola bars, and crackers that are not.)

Gwen B Rookie
Gwen B
Posted
Are we twins? lol I forced myself to eat a piece of bread last night and nothing so far, so I ate 2 more today to see. I have my test in an hour! I think I've now decided it's just a gluten intolerance and I'm not sure how to proceed w/ that as I can obviously eat a little gluten w/ no problem, but I'm not sure at what point I get pushed over the edge. I'm very medical too and like answers, but my kids like to keep me guessing and we never get any answers from tests for them. We're doing Enterolab this month or next for my 3yo.

Dear lighting and Peach,

I sympathise with you both. I also feel the need for some medical confirmation but don't want the hassle of being sick again. My doctor also only ordered a tTg test and believes it to rule out celiac. I can't even seem to get a face to face visit (HMO). My husband thinks it is just soy because that is what I tested posative for in a skin allergy test after an (I think) accidental gluten ingestion (wrong soy sauce in gluten-free restaurant) gave me severe hives resulting an ER visit on Xmas eve. I think that Enterolab would provide the answers to both celiac and other possible food intolerances, but it is yet another expence. However if it meant I felt well enough to do some decent work, it would be worth it! Plus I would then know whether to test my own kids. My mother has celiac and my grandmother is DH and suffered years of ill health before they finally were diagnosed.

If i have to do a gluten challenge it would be a doughnut!

good luck. :)

If I try a

lightening16 Rookie
lightening16
Posted
  • Author

I have to totally agree with you all fronts... however my husbands family is very devious. When I finally figured out I was lactose intolerant after my gall bladder surgery, they would secretly test me as they thought I was making it up. I kid you not. I love them dearly and they really mean well but every time I go there they will test me if I do not really get this figured out.

So far two days back on gluten and LOTS of gas and several trips to the bathroom. Rumbling stomach and bloating. I will ask my doctor for another test and bring in some literature too. I had to pay for it anyways so it shouldn't bother too much.

Thanks for listening!

Heather

lightening16 Rookie
lightening16
Posted
  • Author

Who would have thought there would be so much mental anguish over all this... and so much gas.

I guess we just have to be patient! Good luck and hopefully you have eaten enough gluten to give you a positive result assuming you are celiac.

I feel a expensive Enterolab bill in my future!

tarnalberry Community Regular
tarnalberry
Posted
I have to totally agree with you all fronts... however my husbands family is very devious. When I finally figured out I was lactose intolerant after my gall bladder surgery, they would secretly test me as they thought I was making it up. I kid you not. I love them dearly and they really mean well but every time I go there they will test me if I do not really get this figured out.

So far two days back on gluten and LOTS of gas and several trips to the bathroom. Rumbling stomach and bloating. I will ask my doctor for another test and bring in some literature too. I had to pay for it anyways so it shouldn't bother too much.

Thanks for listening!

Heather

I mean no offense, but that is a horrid, horrid thing to do. If you had a peanut allergy, but hadn't had it confirmed by the allergist yet, would they serve you peanuts to see you whisked off ot the ER with an anaphylactic reaction? I would encourage you to not accept any more food from them. Ever. What they do is borderline abusive, the only thing making is seem not so is the degree of your response.

Gah! Sorry, I'm horrified.

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