New Here; An Introduction With Some Questions

[crujones]

Hello all. A friend of a friend recently directed me to the forum, and I am really glad that they did.

I recently became aware of Celiac Disease (a fluke discovery, really), and when I started reading about it, like many of you here (I've been reading posts for the last week or so), was amazed to find similarities between a number of my unanswered health problems and symptoms, and those listed as potentially caused by Celiac.

I went to my doctor (a new doctor, as I recently moved), and asked to be tested. He ordered a blood test and called this morning saying the results, while technically negative for celiac disease, had other numbers that seemed to indicate that I still might be right. And wanted to move to the biopsy test.

Some background: I am 29 years old, have Selective IgA deficiency (which was diagnosed in 2001), have had HEXA/Bone Density tests reveal Osteopenia, and my recent blood work has shown a really low Vitamin D count (obvious contributor to the Osteopenia?), I also am not absorbing calcium as I should be at this age.

In the past, I have had a a number of yet unexplained bowel problems (flex sig revealed nothing out of the ordinary) that have gotten better (worst in 2002), and have become increasingly intolerant to lactose.

Other symptoms of note, I have struggled with depression, fatigue (neither of which seemed helped my meds), insatiable appetite, suffer from a lot of canker sores and cracks at the corner of my mouth, frequent headaches and migraines, etc.

While I know not all of these may fit celiac disease to a T, I felt it was enough to warrant a test. My quality of life hasn't been very good for a long time, so part of me is really hoping that it is celiac disease, but at the same time, am keeping an open mind about the possibility of it not being celiac disease. (My gut feeling says it is )

Basically, I wanted to introduce myself, thank you all for having such a great community (which I hope to contribute to) But also to ask a couple questions for those that might have similar symptoms.

1) My understanding is that my Selective IgA deficiency puts me in a higher risk category for Celiac Disease, but I'm wondering if that could help contribute to the negative test... my Doctor was aware of it beforehand, so I imagine he would have known to look for that, but its hard to tell.

2) Does the Selective IgA deficiency present further challenges to celiac disease, that i should know about? Are any of you in this same boat?

3) I see a lot of information about Vitamin D deficiency, but not a lot about it being a warning sign for possible celiac disease. Any others with this issue as well? Am I just not finding it?

4) Is there anything, given my symptoms that I should be checking with my doctor on, that I'm not thinking about?

Sorry so wordy, just really interested in finding out more, and hopefully, feeling better soon.

Thanks so much for being here!

[crujones]

Also, an apology, if I asked questions that have been covered before, I really tried to look through old posts beforehand (because I know how annoying that is), but there are a lot! I may have missed things.

If I did miss some of the old topics, could you help and post the topic address?

Thanks again!

[Ursa Major]

All of your symptoms could be caused by celiac disease. And yes, a vitamin D deficiency is extremely common for people with celiac disease, and one of the obvious symptoms. Canker sores, bowel problems, depression, fatigue, osteopenia/osteoporosis, deficiencies in vitamin D, ferritin (which you should have checked), calcium, magnesium, B12 etc., insatiable appetite, headaches....... it all fits.

An IgA deficiency is more likely to give you a false negative on celiac disease tests, which might have happened with you. It is your choice if you want to do the biopsy. If you do, don't try the gluten-free diet yet, because otherwise the biopsy will be negative, even if you have celiac disease.

Or you could just try the gluten-free diet to see if it helps you feel better. But then you can't do the biopsy any more (which in my opinion isn't necessary anyway, but some people like to have that 'official' diagnosis, it's your choice).

I think you are on the right track to recover your health. All the best in your quest!

[crujones]

  Quote

Or you could just try the gluten-free diet to see if it helps you feel better. But then you can't do the biopsy any more (which in my opinion isn't necessary anyway, but some people like to have that 'official' diagnosis, it's your choice).

Thanks for the reply ursa major. I did ask the doctor if I could just try the diet, to see if I feel better. He advised against it. His reasoning, which I understand, is that with Vitamin D levels at 7.8 (extremely low from my understanding), and the IgA deficiency, if the biopsy doesn't officially diagnose Celiac Disease, then we have to keep looking to figure out what else is causing such a deficiency in Vitamin D. That makes sense to me, so I am planning to have it done. They can't get me in for a couple weeks, but I'm waiting for my appt time.

In the meantime, I found it strange he didn't suggest any supplements or anything for the Vitamin D level. Perhaps, if it were Celiac as he/we suspect, I wouldn't be able to absorb it anyway? I plan to ask him about it again on friday. But does that raise any flags for anyone?

I'm going back in on friday to have my Bone Density checked again, to see what has happened with it since 2002.

I'm a pretty nervous about all this, but at least I seem to be making some progress.

[Jestgar]

You can still try the gluten-free diet, after your biopsy. It will do you no harm and if you feel better, you have one answer.

[happygirl]

Just wanted to re-iterate that because you are IgA deficient, the test results are not accurate, because the vast majority of the panel is IgA based (Four of the five...AGA IgA, tTG IgA, EMA IgA, total IgA---which you are negative for; the other is and AGA IgG.)

You can't test positive for something that you already know that you are deficient in!!!!

Although the below is for children, the same theory applies to adults re: IgG

Have you doctor read this: Guideline for the diagnosis and treatment of celiac disease in children: recommendations of the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition.

Open Original Shared Link

"Individuals with celiac disease who are also IgA deficient will not have abnormally elevated levels of TTG IgA or EMA IgA. The occurrence of both celiac disease and IgA deficiency in the same individual appears to be rare in asymptomatic individuals (approximately 1:8,500 of the general population) but is more likely in symptomatic children with celiac disease (approximately 2%). Therefore, when testing for celiac disease in children with symptoms suspicious for celiac disease, measurement of quantitative serum IgA can facilitate interpretation when the TTG IgA is low. In individuals with known selective IgA deficiency and symptoms suggestive of celiac disease, testing with TTG IgG is recommended. Even when serological tests for celiac disease are negative, in children with chronic diarrhea or FTT and in those belonging to a group at risk (e.g., selective IgA deficiency or a positive family history of celiac disease) who have symptoms compatible with celiac disease, an intestinal biopsy can be helpful to identify the unusual case of seronegative celiac disease or to detect other mucosal disorders accounting for the symptoms."

You should also be gene tested. It might be wise to contact a local support group and ask for referrals to doctors who their group members have used.

Personally, I think it would be extremely unwise to abandon the possibility of Celiac given that you are IgA deficient, have multiple symptoms, etc.

[crujones]

  happygirl said:

Personally, I think it would be extremely unwise to abandon the possibility of Celiac given that you are IgA deficient, have multiple symptoms, etc.

For sure happygirl, I'm not planning to abandon the possibilty. I think he is just saying he would rather have the biopsy done asap, so if it is negative, we can start figuring out a plan b to see what is wrong with me.

Thanks for the info on the testing, It is much appreciated, I'll show it to the doctor.

  Quote

You can still try the gluten-free diet, after your biopsy. It will do you no harm and if you feel better, you have one answer.

I agree Jestgar, the second the biopsy is done, I'll probably get started on the diet.

[happygirl]

  crujones said:

For sure happygirl, I'm not planning to abandon the possibilty. I think he is just saying he would rather have the biopsy done asap, so if it is negative, we can start figuring out a plan b to see what is wrong with me.

Thanks for the info on the testing, It is much appreciated, I'll show it to the doctor.

I agree Jestgar, the second the biopsy is done, I'll probably get started on the diet.

I think its great that you will have a biopsy done. Make sure that, before the procedure, that you reiterate to him that you want MULTIPLE biopsies taken in MULTIPLE LOCATIONS. Often, doctors only take one or two, but Celiac damage can be inconsistent, so its necessary to take more than one biopsy.

taken from a leading Celiac center: Open Original Shared Link

Pitfalls in the biopsy diagnosis of celiac disease

These include: 1. Inadequate number of biopsy pieces. The disease is patchy, this combined with the fact that all biopsy pieces may not be oriented sufficiently to assess the crypt to villous ratio means that at least 4 to 6 biopsy pieces need to be taken. Biopsy of the descending duodenum is sufficient. 2. Over-interpretation of villous atrophy because of poor orientation of the biopsies. If the pieces are not sufficiently oriented to assess the presence of, or degree of villous atrophy deeper cuts of the tissue block need to be ordered. 3. If the biopsy interpretation does not match either the clinical impression or serologic results the biopsy should be re-interpreted by a pathologist expert in the interpretation of gastrointestinal pathology.

Best of luck, and I hope that you find some much needed answers, regardless of if they are related to Celiac/gluten.

[crujones]

Just an update, I had my Endoscopy/Biopsy yesterday morning. The doctor took 10 samples, he said doing a smaller number while looking for Celiac would be a disservice to me as a patient. (nice, huh!). He said he'd probably have the results back mid-week next week. They also found a "tiny hiatial hernia" but not anything that they are worried about. I'll be sure to keep the thread posted on my results.

For those of you worried about the Endoscopy IT WAS A BREEZE! They didn't knock me out, but I don't remember anything, something about my short term memory being sedated?. It was a strange feeling, for sure. One second, I was on the table, the next second I was in the recovery room. Aside from being a little groggy when i left, and needing to take a nap when I got home, it was no problem whatsoever!

Post-Endoscopy, I had a few minor pains that felt sort of like a localized heartburn in a couple places, but nothing bad. Roughly 24 hours later, I feel fine and totally normal. The worst part of the whole process was the anticipation.

Feel free to PM me if you have other questions about the process, I'd be happy to answer anything I can.