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Could I Be?


absentee thoughtlord

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absentee thoughtlord Newbie

Hi Everyone,

Sorry if this isn't the right part of the forum for asking this, but...

I'm still awaiting the results of a blood test for Celiac disease, but wondered if any of the following makes sense or suggests that I might be. Truth is, I'm so worried about my health at the moment, especially as I have two young children and I can't be the dad I ought to be.

Here goes...

I'm a 39 year old male.

Eighteen months ago I can honestly say that I've never felt fitter in my life, but around a year ago I started to feel a bit "off colour" and mild pains in my upper abdomen (more to the right than left). I had a course of antiacids which seemed to work, but I had the same ups and downs when I wasn't on the PPI's.

About 4 months ago the malaise became more "foreground" and I've been losing weight ever since. Truth is, I've always been slim despite eating well, but it's been a gradual decline since mid Summer. Furthermore, tehre have been days when I thought I've been dying (literally) and others when I feel comparatively well.

I've just had a CT scan on my Pancreas (no results yet) but blood tests suggest that it's working fine. Similarly, an ultrasound about six weeks ago showed no obvious signs of anything untoward.

A gastroscopy two weeks ago showed a mild/moderate gastritis, but nothing that should account for the weight loss.

Other things worth mentioning:

I have consistently had slightly elevated levels of bilirubin for over a decade.

Eight years ago I had a biopsy on one of my raised lymph nodes - no cancer - but they remain permanantly up.

I don't have any diarrhoea or such.

I had some nausea a few weeks ago but that seems to be a lot less now.

Does this sound familiar to anyone???

Any thoughts are very, very gratefully received.

Christian


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Kay DH Apprentice

There are so many symptoms and potential symptoms of celiac and gluten sensitivity. It can hit anything, and not everyone has GI symptoms or damage. Even with negative blood and biopsy results, the best test is to see how you are when gluten-free. My symptoms started a year ago, a couple of weeks after getting the flu. My symptoms are fairly typical for celiac, but all my tests have been negative except for having the HLA-DQ8 genetic marker. My health is great as long as I don't get glutened. I assume you have also been tested for allergies, thyroid function, and had the poop test for GI pathogens. Being gluten-free can result in false negatives for blood and endoscopy biopsies, so after all your tests are done, you might try going gluten-free. Also, a lot of people have problems with dairy. It might be good for you to check with a nutritionist that is trained in gluten and other food intolerances for help in your diet. It is very frustrating trying to find out what is wrong and how to fix it, not knowing is emotionally so draining. We have all been there. Life is much better once you know.

RiceGuy Collaborator

I agree with Kay DH's comments. Nothing jumps out at me to suggest it can't be Celiac. Since antibodies generally remain for about two weeks or so after the last exposure to a given invader, you should be able to try a few days gluten-free and see if you notice anything, without impacting test results. However, as was stated, it is highly advisable to try a gluten-free diet after any testing you desire to have done. Many people don't experience significant improvement for several weeks or more, so it is important to give it time enough to be sure. And yes, dairy is often problematic as well, especially in the early stages of healing.

lovegrov Collaborator

Like you I felt amazingly fit until ... Boom! Are you anemic? Unexplained anemia and fatigue are MAJOR symptoms. And I had very little diarrhea but plenty of gas.

richard

absentee thoughtlord Newbie

Like you I felt amazingly fit until ... Boom! Are you anemic? Unexplained anemia and fatigue are MAJOR symptoms. And I had very little diarrhea but plenty of gas.

richard

First, thank you all for your replies. Very much appreciated.

As for anaemia? No. In fact, according to my blood tests I'm Usain Bolt - except he can run the 100 in 9.6 seconds, and I can't get out of the house.

absentee thoughtlord Newbie

First, thank you all for your replies. They are greatly appreciated.

As for anaemia? no. In fact, my blood tests say that I'm Usain Bolt - except he can run the 100 in less than 10 seconds and I can't get out of the house some days.

Loey Rising Star

First, thank you all for your replies. Very much appreciated.

As for anaemia? No. In fact, according to my blood tests I'm Usain Bolt - except he can run the 100 in 9.6 seconds, and I can't get out of the house.

What's Usain Bolt?

Loey


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sb2178 Enthusiast

Who. Wicked fast runner, sorta famous if you follow the sport. That's the 100 meter (bout the length of a football field).

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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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