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Seen The Specialist.... Depressed :-(


jo-marnes

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jo-marnes Rookie

So after positive bloodwork following non specific symptoms (occasional stomach pain), I finally saw the gastro specialist this week.

She says given my results she is certain I have celiac, and is scheduling an endoscopy for me within the next 6 weeks. Dreading that.

I've had to take the kids for screening tests - that was NOT fun. Results next week.

So these look like my last few weeks eating gluten containing foods. Suppose I should make the most of it.

Not THAT bothered about the gluten free diet, but am bothered about how others are already treating me.... people already saying 'you'll have to bring your own food' to meals etc. Am frustrated that they won't even try to cater for me... I mean, you wouldn't serve meat to a vegetarian would you? I've tried to explain that it's not difficult really, there are plenty of foods without gluten. But I am generally met with disinterest and the 'it's not my problem' attitude. Which is true, it's not their problem. But I don't want it to be MY problem either. I am very much sulking about it at the moment.... it's not fair, why me? etc etc I'm 27 years old, I am the healthiest, fittest I have ever been in my life, I've lost 25 kgs over the past 3 years and NOW I'm told I have a disease. And it COULD even have been my weight loss that has triggered it. You can't bloody win can you?

So I've not had a period since November, specialist says celiac might be making me infertile if I'm not absorbing all the nutrients required etc... thankfully I've had my kids and I'm not planning any more, but wasn't expecting to be told that. I don't think anyone at my age expects to be told news like that. I'm having further bloods done - iron, folates, Vit D, Vit B12 and bone density - to see if that's potentially what's happening. Not hugely fussed about not having a perios, but not excited at menopause yet either!!!

Sorry for the whinge.. just had to get it off my chest!

Jo xx


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ravenwoodglass Mentor

This is the place to whine when you need to. If anyone can understand those feeling we can here.

I know it is hard to look at your diagnosis as a good thing but once you are on the diet you will be staving off a lot of issues that those of us who went undiagnosed for years have had to deal with. Read a few signatures and be glad they won't be yours in ten years.

Chances are your periods will come back and that really is a good thing as you don't want an early menapause, too many of us have had to go through that.

It will be hard to deal with the social aspect of being gluten free but you will learn how to best cope with that. It can be done.

If you are really dreading the biopsy there is no law that says you have to have one. If your blood work was positive you need to be on the diet no matter what the results of the biopsy are. There is also a risk of a false negative on the biopsy so even if your biopsy results are negative don't think you don't need to do the diet.

We are here to help in any way we can. Ask any questions you need to and do feel free to vent if needed.

shopgirl Contributor

Don't worry about whining. This is the place to do it as we're all in the same boat. I've sulked plenty. And I still sulk sometimes but, as time goes on, it becomes less of a dominating aspect of your life.

But don't stress about the endoscopy. It's much more pleasant (and less time consuming) than a dental cleaning.

ravenwoodglass Mentor

But don't stress about the endoscopy. It's much more pleasant (and less time consuming) than a dental cleaning.

Yea it is a pretty easy test. Basically you go in, go to sleep, wake up and go home. You do have to have someone drive you there and they have to wait and take you back home again.

jo-marnes Rookie

I'm not getting put to sleep!

If I was having a GA that'd be fine. No budget for that apparently!

mushroom Proficient

Well, strictly speaking it's not putting you to sleep. They put you under sedation, and they give you a drug in your IV that prevents you from remembering anything that happened during the procedure. It is not a GA and you recover right away (although you shouldn't plan on dancing the highland fling afterwards.)

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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)
    • Aretaeus Cappadocia
      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
    • nancydrewandtheceliacclue
      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.
    • trents
      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    • nancydrewandtheceliacclue
      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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