Tests Negative, Were They The Right Ones?

[BuggysMommy]

Hi all, new here and I just had a few questions, if anyone can help me. I have been having issues that have been steadily progressing since I had my son (3 years ago). I began to notice them about a year after he was born. (Sorry if this is going to be graphic, I just can't take it anymore...) I have been having bad digestion issues, like diarrhea at least twice a week, every time I defecate it's foul-smelling, I have gas basically all day, and it's foul-smelling as well. I also have stomach cramping, usually relieved by passing gas. I burp alot, and I get very bloated as well, from shortly after breakfast lasting all day. All of this is daily, by the way. I cannot gain weight no matter what I try, in fact I lost 60-lbs after I had my son without doing anything. I always have loose stools even when they are not technically diarrhea, usually "floaters" (sorry). I get random muscle cramps in my calves and feet, as well as frequent (but low) joint pain. I am ALWAYS tired, to the point where I don't feel like doing anything, and it's affecting my son. At the same point that these started, I also began having serious nasal and sinus allergies, eventually had surgery to remove damaged parts of my sinuses due to these constant allergies, and no OTC meds help. I've never had a single dental problem in my life, and then within the past year I have 5 cavities. I have also been uncharacteristically irritable lately. Since having my son I have a hard time seeing at night, especially when driving. I realize that alot of these symptoms aren't digestive-related, but I figure it can't hurt to throw them in here.

Ok, so about a year and a half ago my old Dr tested my for Lupus, and one of the tests came back elevated (anti-dna something). He wanted to retest in 6 months, but I changed insurance companies and had to switch Drs, the new one didn't think it necessary to retest. I had H Pylori about 8 years ago, but was recently retested and came up negative. Here are some results of bloodwork I had done last week:

Endomysial Antibody IgA: all it says is "negative"

t-Transglutaminase (tTG) IgA: 1 (expected 0-3)

Immunoglobulin A, Qn, Serum: 228 (expected 70-400)

A CBC came back completely normal, as did a complete metabolic panel.

I get that these results mean I don't have celiac disease, but I feel like my symptoms read like a celiac manual. Oh, and I should add that all of these symptoms get worse after eating certain foods, such as pasta, pizza, bagels, sandwiches, things like that. I was almost hoping for a diagnosis of celiac, because if I don't, then most likely it's IBS i suppose, and there is no help for that. I just don't know what to do, this is making my life miserable. I am going to a Gastro in a few days, so hopefully will get some answers then. I just am sick of feeling this way, and I need help.

I should mention that my father, his brother, and my cousin all have the same symptoms. My son has also had a heck of a time gaining weight ever since he was 6 months old (started solids), and is not even on the percentile charts. He also has about 3 stools a day, usually loose-ish but not always. Sorry that this is so long, but if anyone has any words of wisdom I would be super-appreciative.

Buggy's Mommy

[Ursa Major]

Hi, and welcome to these boards. Those blood tests are not all that reliable and yield many false negatives. Some people here had negative blood work and positive biopsies.

So, you may still have celiac disease. But it sure sounds like you are gluten intolerant, and it doesn't really matter if it is actually officially celiac disease. The treatment is the same, which is a gluten-free diet.

You have an awful lot of the symptoms (and celiac disease symptoms aren't all gastrointestinal symptoms, because gluten affects the nervous system, brain, joints....... really, the whole body). Starting to get better on a gluten-free diet is proof enough that you should not eat gluten.

IBS is not a valid diagnosis in itself. IBS is a collection of symptoms, and something is causing them!

It sounds like you have a whole family of gluten intolerant people. You might as well include your son in your gluten-free diet, he sure sounds like he is gluten intolerant as well.

[BuggysMommy]

Thanks for your quick reply! I am debating actually getting the endoscopy if the Gastro recommends it at my visit. The only reason I would want a concrete diagnosis is because I think I've read there is higher risk of other issues (can't remember what at the moment) for those who have celiac disease, and I would want everything monitored. As far as my son, I am pretty sure that both of us are at least gluten intolerant. I'm almost crying thinking about starting him on a gluten-free diet, because his appetite is ungodly small. He is the pickiest eater I have ever seen, and I am scared that on this restrictive diet he will have a very hard time finding things that he will actually eat. He's only 3, so I doubt he will understand that eating gluten-free food will make him healthier... I'm going to stick out my normal gluten-filled diet until Friday, and see what the Gastro has to say. Ugh, why can't my stomach just be NORMAL?!?!?

[Ursa Major]

You know, your little guy may be such a picky eater because eating food makes his tummy hurt! There is lots of food he can still eat, really. All fruit, meat, vegetables (you should also eliminate dairy for at least a while, as it can stop you from healing, and the same goes for soy). There are quite a few gluten-free cereals, rice or almond milk can replace dairy. Nowadays there is so much gluten-free food available, you can pretty much find a gluten-free replacement for everything you like that has gluten.

And it WONT hurt your or you son's stomachs!

Anyway, even if any biopsy you may have comes out negative, you should still do the gluten-free diet. And make no mistake, even if you don't have celiac disease but 'only' gluten intolerance, you can still end up with issues just as serious as with celiac disease if you don't stick to the diet.

Non-celiac gluten intolerance is more likely to cause nervous system damage, including ataxia, and even mental illness (yes, even schizophrenia, depression, ADHD, bi-polar, MS and others). It might not manifest exactly the same, but is just as bad.

By the way, failure to thrive (especially not growing) is the most common celiac disease symptom in young children. Plus being a picky eater and not having solid bowel movements. The sooner he is on a gluten-free diet the better, so he can start growing!

It would be good to have your son tested as well. Just know that in young children those tests are extremely unreliable (even an awful lot more than in adults), and the most reliable test at his age is trying the gluten-free diet. If he improves on it, you would really have your answer.

Several of my grandchildren are gluten intolerant as well. We don't know if they really have celiac disease, but don't care. My oldest daughter and her five kids are all on the gluten-free diet, and only ONE doesn't seem to be gluten intolerant (but is gluten-free anyway, because there is no way that she will feed one three-year-old gluten, when the rest of them are gluten-free).

My second oldest daughter has a mother-in-law with celiac disease, so it comes from both sides with her kids. Her older girl (of two), who is now 22 months old, never had a solid bowel movement until she put her on the gluten-free diet. She also used to have dreadful temper tantrums, which went away when gluten was eliminated. As did her rashes.

I hope you figure it all out soon!

[BuggysMommy]

Thanks! I think I've decided to just go gluten free for both of us. Should be interesting to see his reaction... Unless this doctor will do the endoscopy within the next week I think I'm just going to skip that as well and go on the diet as soon as possible.

And by the way- I thought those were your kids in your avatar, not your grandkids!!!

[Worriedtodeath]

Please try the diet. My youngest at 19 months started us on the Gluten-free Casein-free diet and I extended it to the whole family. Here are the things that have completely dissappeared in 8 weeks (YES 8 WEEKS)

Oldest child 10years old - no constipitation , normal stools every other day, bumpy dry skin is disappearing, no tummy aches - He didn't know he had a stomach ache until after giong gluten-free and realized it no longer hurt. Has started growing and has grown more in 8 weeks than he did all last year.

Middle child 7 years - no more D. Stools are normal and he no longer stays in the bathroom all day or have accidents because he couldn't make it to the bathroom, Most importantly the child who struggled to read Cat in the hat is now 8 weeks later reading Corby Flood adventures and long chapter books and the child who couldn't from one day to the next remember math concepts now has no problems with them. He can also carry on a conversation without stopping to remember what he was talking about it. HE's 7 for God's sake and had the memory of senile 70 year old. It was like dealing with one too.

Youngest 20 months old- NO more mutliple loose stools a day. Down to one SOLID normal looking stool every day. NO more temper tantrums, sleeping most of the time at night, EATS constantly instead of taking a bite and throwing it down, HAPPY instead of hating the world , plays with other kids instead of screaming at them, IS NOW TALKING instead of screaming at us, is socialable instead of clinging to me, no longer needs a constant juice drip but drinks normally

ME- No joint pain And i was on meds for years before I had kids due to the joint pain and diffucultly in walking. I can see at night instead of it being a blur of lights, I have energy and am no longer exhausted, I can think again instead of feeling like I am in a fog all the time, I've lost 12 pounds - I gained 60 literally overnight after years of being extremely skinny- and I have normal solid stools now as well. My results are much slower than the kids but improvements are starting. I get out of bed without feeling like a mac truck ran me over.

Good luck!

[BuggysMommy]

Thanks so much! Yeah, I have decided to go gluten free for both of us. Now I'm off to find just how I should go about doing that... Luckily though I'm in New Jersey, right outside of Manhattan, so there are Trader Joe's, Whole Foods, and a million other specialty food stores on every corner. Thanks to all for the advice, I appreciate it! I wish I would have found this site a year ago, could have saved myself some frustration!

Buggy's Mommy

[itchygirl]

You may also want to read more on the anti-nuclear antibody test, since the doc appears to be dropping the ball on that....

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