Did I Make A Huge Mistake?

[nsoroma79]

Hello everyone, my name is Lorrie and I'm new here. I've had stomach aches all my life and they've been getting worse. My symptoms include: constipation, my intestines feel like steel, bloating, nausea and acid reflux. Then there are others not tummy related: severe depression, anxiety, headaches, joint pain, insomnia, fatigue, fogginess and others. I do also have Chiari Malformation and Ehlers Danlos syndrome as well.

So 2 weeks ago, I went to a gastro doc and was told it could be a variety of issues but it sounded like celiac. I was scheduled a month later for an endoscopy and colonoscopy. But I decided, like an idiot, to go gluten free. It's been since July 1st, but I've been accidentally glutening myself. I'm new to all this. So after 3 days of what I thought was no gluten, I had the blood test done and it was negative.

I'm now about one week in, of being gluten free and I am miserable. I'm so depressed, I can't eat anything without feeling sick, I'm back to being constipated and I hate my life. Worse part is, I have to start eating it again to get my test in 2 weeks. I just sat at dinner tonight and cried.

I'm also emetophobic, so the thought of getting sick from it, scares me. I accidentally ate twizzlers the other night and felt horrible. I'm wondering if too far into this now to go back or if it's even worth it. I have the same symptoms now, as I did before I went gluten-free.

I'm sorry if this is a bit jumbled, but I'm panicking and I'm just a mess.

Thanks for reading

[StephanieL]

I am so very sorry. I wish I had more to say but I do offer hugs!

 

I have a question though, are the Chiari Malformation and Ehlers Danlos connected in some way or do you just happen to have them both?

[LauraTX]

Welcome, Lorrie!  

 

Good news first, is that especially with you having not been 100% gluten free, being gluten-free for only a few days is not going to make a big impact on your tests.  It takes a long time for antibodies to go away and for the gut to heal up.  Second, did you get a copy of your lab results?  If you would like to share them here including the given reference ranges, we can help you make sure something wasn't missed.  You can ask for a copy of the results if you don't have one.

 

For now, you only have two weeks left of sticking through eating gluten, and I really hope you are able to get some conclusive results with the endoscopy.  I understand the emetophobia (fear of vomiting), as I am not on the phobia level but will avoid vomiting because I hate it so much.  Do the best you can with what you have for now, and after the endoscopy you can go gluten-free if you feel like it will make an immediate difference for you.  But it is important to make sure all the diagnostic blood tests are done before going gluten-free.  

 

Let us know how the scopes go, and feel free to ask any questions you may have.

[nsoroma79]

Thank you Stephanie. I was diagnosed in 2008 with Chiari, after a bad car accident. I lived up to that point diagnosed. From there I went to the Chiari Institute and confirmed that I had it, along with EDS and tethered cord syndrome. It's been downhill since then.

[beth01]

I really have no clue about the other diseases/disorders that you have going on.  I understand the emetophobia but the other two when I looked them up the brain fog gets me going from screen to screen.  It sounds like the symptoms of Chiari and Celiac are along the same lines and with Ehlers you have to keep a close eye on all other sytems that are not affected, digestive being one of them.  Did I get that right?  What kind of treatments did you have for both and do you have any lingering problems from either that you know can be contributed to the original disease and not celiac related?

 

The celiac testing - What exactly did your GI test you for and what were the results?  Those are very helpful in us trying to help to interpret them.  It seems to me, and someone correct me if I am wrong, but two weeks gluten free before testing shouldn't matter much unless your levels were borderline especially if you have had a glutening. If you could stomach it ( pardon the pun), I would finish the gluten challenge for the endoscopy and ask for retesting with a full panel of celiac testing ( tTg IgA and IgG, Endomysial antibodies IgA and IgG and the gliadin antibodies IgA and IgG plus a total IgA) and make sure they take 6-8 biopsy samples.

 

With you trying the diet now, don't expect changes to happen over night.  In fact they seem to get better before they get worse.  I have seen people state that the first year is the hardest. I wouldn't worry too much about it until you get the biopsy taken and then try the diet.  Read the newbie thread on here and read about cross contamination.

 

Good luck!

 

** Laura was posting as I was writing.  We said the same darn things

[LauraTX]

** Laura was posting as I was writing.  We said the same darn things

Get out of my brain!!! 

[beth01]

HAHA great minds think alike.  I think I probably started first, it takes me damn near an hour to type that much with the lysdexia and frain bog.

[nsoroma79]

Thank you everyone for reading and being so welcoming! below are my test results.

Component Standard Range Your Value

Tissue Transglut (Endomysial) see fn U/mL <1.2

Ref Range: <4.0 (Negative)

She only ordered one test (it was my pcp and not a gastro doc) and mentioned s more in depth one, but said I should be fine with just that one. In my results she said that I may not have had enough gluten in my system..... But I had eaten gotten the night before by accident ahs just had a cupcake 3 days before that. So I doubt that was the issue.

It's only been 2 weeks since I started decreasing gluten overall and now it's been 3 days without any that I know of. Aside from touching pizza crust today and being fine.

As for my other problems, Chiari is where I have a small piece of brain matter that protrudes out of my skull and into my spinal column. It swells and causes the cerebral fluid to backup. Horrible headaches!! EDS, is more so that my body doesn't produce collagen. I have painful joints and muscles. It seems that a lot of people with EDS have stomach issues, since the intestines cannot move like they should. As far as treatment, I have been fighting to get disability, but since both are rare, I can't get approved. I can't work and I'm on welfare. Sadly, they won't pay for fancy genetics testing and other specialists. So, I'm pretty much up the creek, until I marry a rich man lol

Since its only been a few days since I've not had any gluten, I'm thinking I should be ok with eating a bit. I've lived on bread and baked goods, up to that point. Plus, I was always baking, with no issues.

I'm just scared to take that first bite... just in case

[Sunshine Sassie]

Hi Lorrie,

I can relate to a lot of your symptoms (chronic constipation, intestines feeling like steel, boating).I do not know if I have Celiac disease, Non-Celiac gluten sensitivity or just IBS (my first G I appointment is next week). But I can relate strongly to the overwhelming feeling and crying at the dinner table You are not alone! I get so discouraged though out the day; some things that help me when I'm not feeling well are comfy clothes, a bubble bath, and some TV. This forum also has helped me a lot and I hope it helps you too

[beth01]

The testing you had done is not adequate testing.  For one they would need to run a total IgA and note a normal level to state that the tTg IgA alone is negative.  There are many more tests that I mentioned previously.  I would have them done, eat gluten if you can to get the most accurate results.  I would want to know as much as I could if gluten was my problem in your situation with all your other problems.  Hopefully one helps the other, getting your diet down might help alleviate symptoms across the board. I believe MA will pay for the standard celiac testing but not the genetic testing.  I had asked about it since I am on MA because I have been too sick to work but was told it wasn't necessary due to my tTg IgA levels and my biopsy results.  I had them all done on the same day.  Good luck to you and keep us posted!

[StephanieL]

Thanks nsoroma79-  I hope you don't think I was prying. My DS who is 7 is currently being evaluated for Chiari Malformation and I have questioned ED for him before too. I was just wondering if they often occur together because you mentioned both.

 

 

I hope you can stay on gluten long enough to get the testing done. It's hard I'm sure but it would be great to have answers in the end!  Hang in there!

[SMRI]

I'm sure you have found this information now, but to be properly tested you need to have "normal" amounts of gluten in your system.  Those that were gluten-free that go to be tested eat about 1-2 pieces of bread each day for 4-8 weeks so having a cupcake or a couple pieces of candy isn't really enough, nor is just touching a piece of pizza.  I only know one person with Chiari and she is also gluten-free.  She seems to do better that way.  I don't know if she is officially Celiac though.  She recently had surgery to help correct her Chiari and has been doing very well.

[nsoroma79]

Thank you again for all of your responses. I called the doc office yesterday and was told I need to be eating gluten again. Since it was only a few days since I ingested gluten, I would be fine. So, last night I ate a handful of frosted wheat cereal and I felt fine. No upset tummy. But within 2 hours, my knee pain started up again and today..... I'm very dizzy, my right arm and hand are numb, my leg is in so much pain and I just feel out of it. I also very anxious.

Can these be side effects of gluten?

[1desperateladysaved]

Sure.  It would be a good idea to write these types of things down and share them with the doctor during the next visit.