Need Advice

[mamabickler]

Hi again,

We spoke with our pediactrician and now I'm totally stressed out again about my original decision. She really wants to do the gluten challenge and do the celiac blood panel and suggested he eat FOUR slices of bread each day for a month before she tests. That seems like so much. He's only been off gluten for a month or so and we've seen many improvements. Her thoughts were, better to get him diagnosed now instead of waiting and doing a gluten challenge later on. I just don't know. What if his symptoms return so badly - do I have to wait 4 weeks to get him tested? Do you think it will be accurate if we just go ahead and take the blood? I have stressed myself out so much about this I just don't know what to do. I'm starting to feel crazy and even second guess if gluten is even the problem.

Thanks if you made it this far

[tarnalberry]

Did she say WHY he needed a diagnosis if he was showing improvement on the diet? Did she say why such a change on the diet wasn't sufficient evidence? Did she say why a return of symptoms on gluten after the reduction in them off of it wouldn't be enough for a diagnosis? And, more specifically, did she say WHY it was worthwhile to risk causing such extreme damage to his intestines just for this test? I'd did a little further and see if you can find out if this is anything more than "if we don't do test X, we can't diagnose Y" or if there's a real reason.

Four weeks back on may or may not be long enough to cause enough damage to his intestines to pick up on biopsy. But it may be enough to bring back severe symptoms.

This isn't a right or wrong decision, though. You alone know what the circumstances are for your family and which choice is the best way to go. Trust your instincts.

[Cara in Boston]

There is no guarentee that 4 weeks will be long enough to make the test accurate. Since it may not even be accurate in the first place, you are going through a lot and could still end up with no answers. I know how you feel - it is hard. I have been obsessed with gluten since November when my son tested positive. I dream about it - when it is not keeping me awake at night.

Eventually, you may need to do the test. The question is, do you need to do it now? You could give the diet a little longer to see how he responds.

My doctor (and my son's doctor) both said a minimum of three months and even up to six is necessary to try and get the most accurate test results.

He never went gluten-free, so I was able to stick it out until his biopsy (just last week). We were lucky and got a solid answer. (positive). I had gone gluten-free after a positive blood test and was in the middle of a three month challenge. When my son's results came back I went gluten-free the next day. I don't need another test to tell me to stop eating gluten.

Cara

[seezee]

This isn't a decision with a right or wrong answer. Trust your instincts or maybe try getting a second opinion from a specialist. From reading your question it seems that you already know what you want to do.

By the way, my co-worker has a mother with celiac and he showed me this article today:

Open Original Shared Link

It's about non-celiac gluten intolerance. It may have some information you find helpful in making your decision.

[mamabickler]

Thank you guys so much. We have put him back on and last night he woke up once, but today his "shivers" have returned. Has anyone experience this? I will post something else about it. It's almost like a shiver you get when you get a chill, except he's not cold. He started doing this when he was about 7 months old and through an eeg we just got diagnosed with "infantile shuddering". The went away with the gluten free diet to almost non existent, now he's done 2 today. GRrrrrr.

[T.H.]

It's almost like a shiver you get when you get a chill, except he's not cold. He started doing this when he was about 7 months old and through an eeg we just got diagnosed with "infantile shuddering". The went away with the gluten free diet to almost non existent, now he's done 2 today. GRrrrrr.

When your little one was diagnosed with infantile shuddering, did they do an EEG during one of the shivering attacks? Because the way you described the shivering sounds just like I described my daughter's seizures when she was a little toddler, before we knew they were seizures. And gluten can cause seizures.

You may want to quickly do some research on Gluten Ataxia - it's when celiacs get neurological damage with gluten. It's actually less well known, but can cause more serious problems, including numbness and tingling in the limbs due to nerve damage, difficulty controlling the limbs, vertigo, seizures and even brain lesions in the worst cases.

You may want to pause on the gluten until you get a chance to talk to your doctor. Because if gluten is causing neurological issues, from everything I've read, it jumps to a higher risk category. This is because it's not due to nutrient deficiencies affecting the brain, but the body is actually producing antibodies that not only attack the gut but the nervous system.

I have heard of some doctors recommending against a gluten challenge for anyone who is showing signs of neurological symptoms, because the damage is of such a serious nature. But I don't know if that's standard practice, or it just happened to be those doctor's opinions. I've been trying to track down the couple of articles where I found the info. and had no luck so far. I found them soon after my diagnosis, when I didn't realize that my daughter and I both had this, so I just barely registered it, you know?

Sorry this post is so serious, but it's a hot button for me since I met another celiac mom in my city. Her daughter suffered from seizures when she was about your son's age, starting around the same time and growing slowly worse, but she didn't go off gluten until she was about 4, when her mom got diagnosed and tried the diet.

The doctors thought the gluten and seizures were unrelated, until the seizures disappeared on her new diet. However, the little girl has severe learning disabilities, and the doctors can't actually say whether she was born with that, or whether the gluten-induced seizures may have actually caused permanent damage.

It was such a tragic thing to see, her mom telling us about this and nearly in tears when she thinks that something as stupidly simple as food might have done this to her little one, you know? So, apologies if I get a bit serious about it; it's still very vivid for me. :-(

Okay...and now there actually are a couple of things I could think of that might cause shivering that aren't half as scary.

My daughter might have something similar - her arms and legs start shaking if she gets glutened very badly. She says they feel weak, heavy, hard to control and move.

She and I also get low grade fevers when we're glutened, which sometimes causes some shivering. And one last thing is that our ability to correctly gauge how we feel goes down the toilet so we both feel absolutely freezing, even though our bodies are a normal temp.

I am hoping that it is more that your cutie is just feeling cold rather than something more serious.

[Medusa]

Hello, my daughter and my father both pass out if they eat anything with gluten. In fact my daughter can be out for hours and has really bad convulsions. It started after her previous school mixed up her gluten free food with someone else's and gave her a big plate of regular pasta... I have to say that even though she's now totally gluten free she still has what appear to be extremely severe migraines with convulsions now and again, and I can't help wondering privately if permanent damage has been done. My sister is totally in denial about the family history of coeliac and refuses to get tested - and suffers from tingling and loss of feeling in her hands and feet - she's even had operations on her back (largely unsuccessful) to try and fix the problem. Until I registered that I was gluten intolerant too, I had begun to wonder if I had MS, my neurological symptoms were so bad. I really had now idea that gluten intolerance could produce such serious non-gastrological symptoms until my daughter wound up in the ambulance. It's a hot button for me too, not least as the doctors here in Sweden, even the specialists, find it hard to acknowledge that gluten exposure can cause neurological symptoms. I've refused to have my kids glutened on purpose then endoscoped - I feel we've taken too long to figure out what their problems are already and they've suffered enough. Nobody ever suffered from gluten defficiency! Naturally the medics don't like it. It's really tough when you are under pressure to get a "proper" diagnosis, but for us it was clear cut - my daughter wasn't going to survive an intentional gluten challenge unscathed. Good luck with whatever path you need to follow. All the best.