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roomorganizing

Member Since 17 Jan 2013
Offline Last Active Aug 24 2015 12:12 PM
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Posts I've Made

In Topic: Gluten Challenge Confusion

05 August 2015 - 07:31 AM

blackbetty and Shelbz, don't be fooled by your current symptoms, or lack of. Remember, we now know that most gluten symptoms are NOT digestive in nature. The classic celiac symptoms are diarrhea and/or constipation, bloating, cramping/pain, etc -- but the list of over 300 celiac symptoms suggests that the classic symptoms are no longer the major indicators of this disease or intolerance. Personally, at the first and second levels of my family, there are 6 of us with diagnosed celiac disease, 2 who are sure but have been gluten free too long to test positive, 2 who are gluten sensitive, and several in denial/not interested. Only my diagnosed niece reacts to gluten with stomach pain, while one of my "uninterested" nephews has had stomach issues all his life. For the rest of us, the symptoms range from anemia, extreme fatigue, DH, hypothyroid, to severe brain fog, depression, acne, short stature (now remedied), delayed puberty, and others. I went gluten-free when we found out about our son and decided to do a gluten challenge last year. Prior to being gluten free, I had dealt with mild depression and severe fatigue + brain fog most of my adult life, and was surprised that those symptoms were milder than I expected when I reintroduced gluten. However, the lack of energy and brain fog were so frustrating that I could only tolerate 6 weeks of the challenge. My blood tests were within normal ranges at that point, but with both genetic markers along with a slew of symptoms and a huge family history, I have no doubt that I have celiac disease and choose to stay gluten free. I WISH I had stuck with the challenge!

 

The two of you look really young, so my personal opinion is that it's very important to get a diagnosis. Potential issues that could arise as you get older or with any future children could point back to your diagnosis and give docs a better foothold on your situation. On average, it takes 11 years for someone with celiac disease to be properly diagnosed, so please don't mess an opportunity! Hang in there and don't be thrown off by your mild reactions so far. Like cyclinglady indicated, you never know what's lurking under the surface....even when you don't feel sick.


In Topic: Long Story Of Neurological Symptoms And Lowish Ferritin- Could It Be Celiacs?

17 July 2015 - 07:54 AM

Bane, I am an infrequent poster, but I have followed this forum almost weekly (sometimes daily) for 5 years since finding out that our oldest son (now 21) has celiac. His was found with a high tTg that lead to a positive endoscopy. That single discovery began the celiac avalanche for my family. Because of the reading I did here, I knew that everyone in our family needed to get tested, and I became insistent, unwavering, almost nagging in my certainty. Here's what we have uncovered to this point:

 

My father: diagnosed at age 72, 1 1/2 years after my son. No blood testing, but positive endoscopy with severe intestinal scalloping and no villi. Now deceased from pancreatic cancer.

My mother: self-diagnosed in the 80's with a "wheat allergy." Has been gluten free so long that testing would be pointless. We thought she was crazy.

Sister: diagnosed with DH 3 years ago, which is a positive diagnosis for celiac.

Brother: diagnosed last summer with ALL blood tests on celiac panel being strongly positive. Endoscopy showed blunted villi.

Brother's daughter: blood work positive, though I don't know what tests were run. No endoscopy. 

Another brother: Doc only ran Iga serum and tTg tests with normal results last fall. He is hypothyroid with a strong family history. Really?? No full panel?

Me: strictly gluten free for 4 years. Positive for DQ2 and DQ8 gene markers. Tried gluten challenge last year but could only endure 6 weeks. Complete panel showed normal levels. Still gluten free.

Daughter: Complete panel with only DGP IgG showing strong positive, all others normal, endoscopy was negative, positive for DQ2 gene. As a teenager, she refuses to accept that we caught it early with the DGP. Still lovin' her pizza...until I have her tested again. ;-) 

2nd son:  all bloods normal when tested 4 years ago, positive for DQ2 gene. Will retest if symptoms occur.

 

As you can see, my family alone has the full range of tests, or lack thereof, as well as results. Every test is important! It seems that some doctors don't know the difference between a full panel for TESTING and a couple of tests for SCREENING. I remember someone here posting about that, though I don't recall who it was. Also, from all my research, the tTg Iga is very accurate (as long as you are not Iga deficient) in detecting advanced damage to the intestines. The DGP can be an early detector before too much damage is done. There's a reason for each test, so get them all if you can!

 

I have spent a lot of time reading and researching over the last 5 years, and personally, I would not question what the moderators of this forum recommend. They have seen it, experienced it, heard it all. None claim to be doctors, but as far as educating newbies on celiac, they are tops!

 

Keep us posted!


In Topic: Long Story Of Neurological Symptoms And Lowish Ferritin- Could It Be Celiacs?

15 July 2015 - 06:07 AM

Sorry this reply is a little late, but you don't really need a referral from your PCP. He/she can order a complete celiac panel to be run...it doesn't have to come from a specialist. Be sure to write down or have on your phone the list of tests that cyclinglady posted above and MAKE SURE the doc shows you that those tests are requested. If it lists "Celiac Panel", ask what tests are included. I have said the same to everyone in my family and a few friends who have gone for celiac testing, and so many of them have showed me their result reports which list only the total serum IGA and the tTg. They asked for a full celiac panel to be run, but never did enough research to really know what the panel consists of and didn't insist that the docs tell them what they were ordering. Unfortunately, they are not getting the complete picture and stay frustrated that they can't figure out what's wrong. GO ARMED...please!!


In Topic: Need Advice On Diagnosis

09 October 2014 - 11:01 AM

Kathryne, your dilemma made me think of this thread:   

 

http://www.celiac.co...ac-disease-now/

 

I've read on this forum and through other research that villous atrophy can be caused by other culprits, but with the symptoms you experience I would want to totally rule out the most obvious thing (gluten) first before moving on. I share your pain in getting a definitive diagnosis. You are young and having that knowledge could be very important for any potential future ailments, and certainly if you have or decide to have children. Be your own advocate, read all that you can, and insist on getting answers.....even if that means doing a gluten challenge :( . From what I understand, you are working with a very knowledgeable organization. Maybe it's not out of the question that your doc would give you that diagnosis if you asked specifically? I have been under the impression that villous atrophy means celiac, especially since blood testing can be so touchy. I know there are others here who have much more experience and can address this better. Hang in there kiddo!


In Topic: 14 Year Old Diagnosed By Growth Failure Help Please

25 September 2014 - 01:00 PM

My teen (14) son was diagnosed with growth failure due to celiac. He has gained 20 pounds 3 months on a gluten free diet but hasn't grown height wise yet.

For anyone diagnosed as an early teen can you tell us if it's normal to get a little chubby initially on a gluten free diet. He is unhappy to be short and now unhappy to feel like he is getting fat.

Thank you very much for your help. He'd like to know if anyone else experienced weight gain initially without a height increase.

 

KayJ, so sorry this response is late. My hope is that you revisit your posts to check on new replies.

 

Our oldest son was 16 when we got his diagnosis. As a child, he always measured in the 75-90% range for height and about the same for weight. As he got older, he began to measure out in the 50-75% range for height and 85-100% for weight. We didn't think much of it because our boys were always "husky" like their dad....taller with muscular build, powerful football thighs, heavier than most of their peers. As middle school came to a close, we realized that our son was growing VERY slowly compared to his brother who is 2 years younger and was already 2 inches taller. His freshman year of high school, we noticed that his voice was not changing, nor did we see any peach fuzz on his face. When he turned 16 during his sophomore year, I decided enough was enough. Still no squeaky voice, no peach fuzz, and a height of 5'3" at the doctor's office....that put him in the 10th percentile for height among his peers! I asked our GP to test him for growth hormone deficiency, testosterone levels, anything that might give us some answers. He did, and more. He told me about a speaker he had just gone to hear at our local hospital (Dr. Fasano) and that our son's lack of growth could be due to celiac disease and that he would like to run a celiac test. I had no clue what he was talking about, but didn't care what he tested for at that point if it might offer some clues. 

 

Our son's bloodwork came back with a high tTg which prompted our doc to order an endoscopy which came back positive with blunted villi. I spent hours on the computer reading, and specifically on this forum. I was fascinated! He never had the "classic" symptoms of digestive issues. In a year and a half after going gluten-free, our son grew from 5'3" to 5'9". Today, he is 20-years-old, stands just over 6' and is taller than his brother by an inch. As I have looked back over the years, I have recalled many things that I believe were caused by his celiac disease, such as a pretty severe tic that lasted for a couple weeks when he was five. He still carries a little extra weight, but he definitely slimmed out once he started growing. Try to be careful of the all the gluten-free goodies that are available these days and hopefully he will experience the same slimming as my son did.

 

Happy growing!!


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