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Wondering If I Should Get Tested


megsybeth

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megsybeth Enthusiast

I just came to this board while searching related to my son who I strongly suspect has celiac. The thing is, the more I read, the more I wonder if I should get tested myself. It's not something I ever would have thought of but then I read different things and they connect to a lot of health issues I've always dismissed as minor or psychosomatic. As a child I sometimes had stomach problems, pain mostly, but thought it was just stress, also migraines and canker sores. I still often get canker sores. And I sometimes have stomach pains and diarrhea but I always just figure it's from too much coffee or not sleeping well. Twice I've gone to the emergency room for extreme stomach pain that they couldn't diagnose and I always worried I was getting an ulcer.

I've never noticed a strong reaction to wheat but I do notice that I have an aversion to a lot of wheat products. I've always hated sandwiches, usually just eating the insides. But then again I love cake and cookies and will literally eat them until I'm sick.

I don't really know if I get bloating. I guess I'm not that in tune with my body but I do have a very big belly compared to the rest of me, which is very thin. When I was a child I looked like a spider.

I do think I'll have blood work done as a way to get a better picture of my son, but do you think I'm just spending too much time thinking of these things and reading into what I have? I don't really think of myself as sick, but I guess if I do have celiac, I need to be taking care of my body.


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Takala Enthusiast

The genes are hereditary and he would have had to have inherited them from somebody... so if it did turn out that he had celiac, they would recommend that you get tested also, as a first degree relative.

You might also not be sick enough yet to think of yourself as "sick," like you said, because for you what might feel normal might be for another person feeling bad. There is something really odd going on in our culture right now that we seem to need so many people medicated for depression, anxiety, thyroid, diabetes, asthma, bone loss, heartburn, etc - all these can be linked to celiac. The chemicals that effect mood in the brain are mostly made and live in your intestines, not your brain, but in your gut, along with all that bacteria with which you cannot digest your food.... alter the gut flora, say, with a wheat and sugar diet, and sometimes strange things happen.

Intense sugar cravings for junk food area also a sign of malnourishment, as your body interprets being low on some minerals as "FEED ME NOW" which gives you a temporary surge when you eat that junk, but then you crash afterwards and the cycle begins again. Once you are getting what you actually need, the desire for a lot of junky carbohydrates diminishes.

MitziG Enthusiast

You sound a lot like a celiac, and yes, you should be tested. The signs of celiac can be so varied and unpredicatble that the medical establishment would do well to test EVERYONE, before making another diagnosis and writing a rx. Celiac just messes with your body in a m8llion, often vague and unspecific, ways.

Celiac Mindwarp Community Regular

Remember, get tested BEFORE you give up gluten if at all possible.

megsybeth Enthusiast

Thanks everyone! I do think I'll get tested and will call my doctor tomorrow. I'm just going to have to learn more about the testing to figure everything out. The thing is my son has had a full celiac panel at least twice before now and stool testing and was negative. But I want to look at the numbers again. He is getting an endoscopy in two weeks, which he hasn't had. He was initially tested for short stature but now he seems to be a poster child for celiac with all the GI symptoms and no parasite, infection showing up on the tests. It's not that I want to get a positive test, but for my son especially I want to know something so that we can help him and know it's not something even scarier.

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      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
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    • RMJ
      I think your initial idea, eat gluten and be tested, was excellent. Now you have fear of that testing, but isn’t there also a fear each time you eat gluten that you’re injuring your body? Possibly affecting future fertility, bone health and more? Wouldn’t it be better to know for sure one way or the other? If you test negative, then you celebrate and get tested occasionally to make sure the tests don’t turn positive again. If you test positive, of course the recommendation from me and others is to stop gluten entirely.  But if you’re unable to convince yourself to do that, could a positive test at least convince you to minimize your gluten consumption?  Immune reactions are generally what is called dose response, the bigger the dose, the bigger the response (in this case, damage to your intestines and body). So while I am NOT saying you should eat any gluten with a positive test, the less the better.  
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      @Riley., Welcome to the forum, but don't do it!  Don't continue to eat gluten!  The health problems that will come if you continue to eat gluten are not worth it.  Problems may not show up for years, but the constant inflammation and nutritional losses will manifest eventually.  There's many of us oldsters on the forum who wish they'd been diagnosed as early.    Fertility problems, gallbladder removal, diabetes, osteoporosis and mental health challenges are future health issues you are toying with.   To dispel fear, learn more about what you are afraid of.  Be proactive.  Start or join a Celiac group in your area.  Learn about vitamins and nutrition.   Has your mother been checked for Celiac?  It's inherited.  She may be influencing you to eat gluten as a denial of her own symptoms.  Don't let friends and family sway you away from the gluten-free diet.  You know your path.  Stick to it.  Be brave. 
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