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I'm Not Celiac...
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5 posts in this topic

The blood tests came back "negative" now she said soemthing about less then 20 which meant negative is this true? I need to look up the testing results others posted. I was actually hoping it was this, because otherwise I am still undiagnosed. I know my bumps and stuff aren't as bad as the pics I've seen of DH- they are just itchy bumps and only get red when scratched too long... and I try hard not to scratch, but they are spreading and my tummy problems are gettign worse and they still kee telling me its just IBS. the drugs don't worka dn they have reversed the original diagnosis of Crohns because they say the test was read wrong and I didn't hae any scarring or ulcerations when they looked back at it... any suggestions would be welcome at this point.

I am pretty sure its food based, but I can't figure out WHAT FOOD! I have another appt on the 5th of August (she finally called me back with test results for the celiac test almost a month later, but won't move the other appt up) and I am going to ak her about sending me for an enterolab screening and getting insurance to cover it... because I can't help but wonder if it will make a BIG difference if we do it!

Does anyone else know fo ailments that do similar things- lassitude, diahrea and constipation both, fatty stools, basically I found like 40 yesses on the list of symptoms for celiacs.. that helped me hope it was that!

would going on a gluten free diet anyway maybe help if the celiac blood panel was negative?

Amie in MI

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The blood tests could be negative and you still have celiac disease and/or DH. Go with Entrolab, because there results are more sensative than blood tests.

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Hi Amie:

I am sorry you are having such problems getting a diagnosis. There are many of us here that know exactly what you are going through. I went through so many procedures (colonoscopy,etc) only to be told I had a severe case of IBS, well I knew better and I would not accept it! I also leanred that doctors are not very educated on this disease and only see things in black in white, they want to see positive results, they want to see someone skinny, they want to see damamged villi etc...and if they don't they thinks its IBS. Of course in their defense it does take time for a disease to show up in the blood, but time was something I didn't have, I had already suffered for over a year. I took the enterolab route (along with my 8 yr old daughter) and our results were positive, we began the gluten-free diet and could tell a difference within a couple of days.

I think if your blood test come back negative that you should either be tested through Enterolab or try the gluten-free diet for a couple of months.

Good luck to you, I hope you get some answers soon! :D

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Thanks- mom says she thinks the doc is laughable because they are ruling things out without proper testing in her mind- she has crohns and I didn't have any new physical tests- just bloodwork, but they are saying because I didn't have physical signs of crohns 3 years ago I don't have it now... even though my SED levels are high, AND she says I sound like her friend michelle who has celiacs and went misdiagnosed for 10 years.

I think once I am back on 2 feet after Fri's wisdom teeth removal (no time to shop for things between now and then) I am going to go gluten free... I may be in the interim, I think most of the stuff I have to eat is safe, but I didn't doublecheck the spices I used in the low tomato mild chili I made myself after overcooking beans and some other things like that....

I am goign to call the doc this afternoon- she only mentioned 2 things being normal in my celiac panel but I thought they had 4, so I'm going to have a serious talk with her and ask to see the actual results- fax or email, since I don't want to wait until the appt on 8/5...

And I am going to seriously research other docs.. but I hate the idea of traveling out of the COUNTY to see one- this practice is the only one in the county, although tehre are multiple docs there, maybe I'll switch but she's the second one I've seen in the office.

Amie

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Wow, Aug is a long time to wait for an appointment. You know your body best sometimes and when it's telling you that something is wrong, something is probably wrong. I hope you feel better soon and that you get your answers.

Gretchen

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    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
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