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Is It All In My Head?


jo-marnes

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jo-marnes Rookie

Hi all,

Thanks to everyone who has replied to my previous posts, I'm new here so you may be seeing lots of questions from me!

A bit of history req'd before I get to the point....

I'm 27 yrs old. I visited GP in November after 3 episodes (a few months apart) of stomach pain. Other doctor already ruled out gall stones and ultrasound of abdomen was clear. She ran bloodwork for food allergies, including TTG IgG and IgA. Both came back very high and I was told I had celiac disease. That doctor gave me an a4 printout with what I could eat and sent me on my way. As you can imagine, I was confused!! I googled a LOT and went back to GP to ask for an endoscopy. She has now thankfully referred me to a gastro specialist.

While waiting for my appt with the specialist I began to notice more discomfort in my stomach (aches). This often seems to be linked to when I consume alcohol though... not always, but mostly. My periods have also stopped (but I do have low body fat - could be the reason). I've had brain fog for as long as I can remember (and my memory is terrible!!) but just assumed this was due to tiredness, not enough sleep etc.

Anyway, appt with specialist was last week. She says she is certain have celiac and has put me on list for endoscopy within next 6 weeks. I came out of appt kind of shell shocked... I guess I was hoping it was all a mistake or something. Also, I'd been told there was a 6 mth wait to see her so was not mentally prepared for it if you know what I mean. I've done a lot of crying, a lot of reading and am still not even NEAR to accepting this is my life now.

Back to my actual point.... in the last month or so I have really felt quite terrible. I feel like it must be in my head some of it.... why would all these things just come together all at once? They don't seem to be related and I can't tell if it's celiac, a combination or just something else. I will try and list things in some kind of order:

Previous to November 2010

  • 3 episodes of stomach cramps (bed ridden)
  • Blood blisters in mouth

November to last week

  • No periods
  • Mild stomach pain
  • Tiredness

Since last week

  • BAD brain fog
  • Chest pain/ tightness
  • Ankle pain (injury during exercise)
  • Heart palpitations (never had before)
  • Aching
  • Depression

Now, can all this be linked or have I just had a real bad week? Maybe I'm just coming down with something else? It's easy to blame celiac for most things, lol. I exercise a LOT so doing my ankle in has really hindered my mental faculties I think.... I'm not getting my endorphine kick and, with 3 small kids, I rely on my exercise for my 'time out' when I can just 'not think' about anything much. However, the chest/ heart things are freaking me out. I have never had this before and I am very fit. Yesterday I went on the bike at the gym and after less than 3 mins my heart felt like it was in my throat. 4 weeks ago I was running 21kms and feeling on top form. My Mum is a cardiac nurse and from what I've described she says it's nothing to be worried about... either it's not my heart or I could be getting a faster rhythm because of another source initiating it... hormones etc. Either way, I'm not having a heart attack. So now I'm anxious about that too, which probably isn't helping.

I just feel like I'm a healthy 'being' but my body has given up on me. Does anyone have any insights or ideas or anything to offer?? Thanks

Jo xx


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ravenwoodglass Mentor

Yes all you are experiencing is likely to be celiac related. The diagnosis was a shock to you and is stressing you a bit and stress can cause the symptoms to excaberate. I am glad they are getting you in for a biopsy soon but even if the biopsis are negative you still need to do the diet. Do keep eating a full gluten diet until the tests are finished and then the day they are done you can start the diet. If you start out with whole unprocessed foods it will be easier and you will heal faster but it does take some time to heal.

If you can get to the endo on short notice you can ask your doctor to put you on the cancellation list so if someone else cancels they can scoot you in their place. You will need someone to drive you there and take you home.

Ask any questions you need to and take the time between now and the biopsies to read as much as you can to learn what you need to do.

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    • Russ H
      HI Nancy, In your first post, you said that you were diagnosed by biopsy and blood test - this is what I was referring to: the blood test is for antibodies that are made during active disease. After a period on a strictly gluten-free diet, the antibodies return to low level. It is a good way of checking for accidental exposure if symptoms persist. If you are reacting to foods that don't contain gluten, you may be reacting to something else. Alternatively, a condition called SIBO is common in people with coeliac disease, where there is an overgrowth of bacteria in the small intestine. This can be tested for with a simple breath test. The main treatment is with a course of antibiotic. Small Intestinal Bacterial Overgrowth (SIBO)
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      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
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      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
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      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
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