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Celiac Dna Test, Symptoms And

alb18

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alb18 Newbie
alb18
Posted

Hi,

It was such a relief to find your website and I feel relieved already having joined. I'm really confused and I'm hoping that maybe someone here can help me sort out some of my thoughts.

I am 22 years old and am currently undergoing Celiac testing. My mother has always had stomach problems that have been labeled as IBS (though the specialist who diagnosed her even said that it was a catch all!) and she has avoided beef and eggs as they seemed to be her triggers. When I was about 14, I started with the same symptoms and also had to avoid beef, eggs and pineapple and all seemed ok. Then a few months ago my mother started with more stomachaches and "IBS" symptoms that eased a little when she cut out dairy. Then they came back. The family doctor mentioned Celiac and when we read about it we saw that it also explained all the symptoms I have had for years. My mum is almost gluten-free now and has seen some improvements, so it would fit that she could be Celiac or gluten intolerant. I am not yet gluten-free because of a rash--I'll come to that in a second.

We both had the blood test and Celiac showed as negative. But, I understand this can happen if you have a low IgA level to start with (I'm not very scientific, so I could be wrong there) so in desperation as we were both feeling pretty ill, we made an appointment with a gastroenterologist who decided that the Celiac DNA test would be the way forward to decide once and for all whether we could have Celiac. We found out yesterday that the DNA test showed that we do have the genes that would indicate Celiac and that "Celiac cannot be ruled out". Next week we have an appointment with the gastro for a follow up but I wanted to get my thoughts clear before that time.

My symptoms are consistent with Celiac: I'm fatigued and weak all the time (getting through college with good grades took all my energy and sapped me of all strength), every joint in my body hurts, I have migraines daily and have had for the past five years, I am bloated, have no appetite to speak of, I've had anxiety for years, I have brain fog, flutters in my throat (I understand this could be GERD?), mouth and throat ulcers, tonsil stones, skin lesions, skin pain, eye pain, floaters, constipation, poor motility, 'greasy' stools, pressure behind eyes, neck pain, Fibromyalgia (I know this is sometimes said to be a catch-all, too), dry mouth, dry skin, dry nose, nasal lesions, gas, feeling sluggish and I'm cold all the time and I have dermatitis herpetiformis. I do feel that Celiac is a likely culprit for my symptoms. Also should add that the past few years have been very stressful.

I suspect that the gastro is likely to want to do an endoscopy to confirm the diagnosis but is this really necessary? I have other health problems (heart stuff and a nervous system thing) that mean that I don't react well to invasive procedures and it takes me ages to heal. In my mind, if I have the Celiac gene and I have the symptoms of Celiac, then surely it's a safe bet that gluten-free is the way forward and that Celiac could be a diagnosis of exclusion, given that other conditions (other autoimmune conditions have been ruled out and treatment for things like brain fog have failed) have been ruled out. Also, I understand that a biopsy of my skin rash could be used to determine dermatitis herpetiformis and that would be less invasive than an endoscopic biopsy: would that be of any use to confirm my diagnosis?

Right now I feel pretty desperate. I have been offered places in grad schools but I feel so ill that I can't imagine being able to get through it. I need help and I need advice from the people who know Celiac best--members of Celiac.com. Do you have any thoughts? Is the endoscopy necessary? Should I just try going gluten-free and see what happens? I have read that the biopsy isn't all that good for diagnosis and I worry that a negative reading there may complicate things yet would not actually indicate that I don't have Celiac. Surely going gluten-free would be a good way forward maybe combined with a skin biopsy (obviously I would remain on gluten until the biopsy had been taken)?

Thank you in advance for your help,

Alice

ETA: I can't figure out to change the title of my post, which appears to be too long! It was meant to say "Celiac DNA test, symptoms and questions".

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Skylark Collaborator
Skylark
Posted

Hi and welcome. You look to be in the right place!

If you have dermatitis herpetiformis (we call it DH), you are celiac. False negative blood panels are not uncommon. If you have IgA deficiency, which is a risk factor for celiac, your Dr. should have run the IgG version of the celiac panel. If you have a personal need for a formal medical diagnosis in order to stick to the diet a positive DH biopsy is all you need to be absolutely sure you have celiac disease. You would not need the endoscopy along with it.

You also sound quite hypothyroid, which happens in a lot of celiacs. That may resolve on its own gluten-free but I'd encourage you to seek thyroid testing.

You may want to see if you feel better avoiding nightshade vegetables (potato, tomato, peppers, eggplant, etc.) for a time to help your joint pain. We also usually find it helpful to supplement vitamin D, B-complex (especially B12), and iron if you're anemic. I'm also a huge proponent of fish oil.

alb18 Newbie
alb18
Posted
  • Author

Thank you for your help, Skylark. It wouldn't surprise me if I am hypothyroid as my mum is and has been on meds for it for a few years now. I'll mention that to my doctor when I see her and ask if she could run a test at some point.

I'm feeling so bad that I want to start gluten-free ASAP but I don't know if I need to stay eating gluten for a DH biopsy. If I go off gluten will that biopsy be ineffective?

Thanks for your help--I feel so much better having found Celiac.com!

Skylark Collaborator
Skylark
Posted

If there is no rash, there is nothing to biopsy. It all depends on how fast your rash goes away. :)

ravenwoodglass Mentor
ravenwoodglass
Posted

I'm feeling so bad that I want to start gluten-free ASAP but I don't know if I need to stay eating gluten for a DH biopsy. If I go off gluten will that biopsy be ineffective?

Thanks for your help--I feel so much better having found Celiac.com!

You need to have active lesions for the biopsy so it depends on how quickly the antibodies leave your system. Be sure the derm knows how to correctly biopsy as they need to biopsy intact skin next to the lesion not the lesion itself and they need to be looking for DH.

Whether you choose to go through more testing or not is up to you. In some cases a formal diagnosis is needed, like for accomodations at college.

In some cases a doctor will give a formal diagnosis if you have been ill and your problems all resolve on the diet. Talk to your doctor about it if a formal diagnosis is something you need.

suziq0805 Enthusiast
suziq0805
Posted

If your mom was eating very little gluten at the time of testing it could possibly give a false negative on the blood test also.

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