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From Your Experience, What Would You Do?
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14 posts in this topic

I know you all have probably been asked this a million times, but I am hoping to gain some insight from your knowledge and experience having been through this before (some of you, anyway).

I received my results from my endoscopy this month that confirmed I have Celiac Disease. From reading this forum, I requested my son to be tested. No one suggested that I have this done and I am so glad for this forum to actually learn some things.

I received his tests back today, although I asked for a list of tests to be done (I sent them a lengthy email with info I copied elsewhere about what tests he needed performed in his Celiac Panel), it looks like they at least did 4 - all were negative.

They did:

Gliadin IGA Deamidated: 4 (<20 normal)

Gliadin IGG Deamidated: 6 (<20 normal)

Tissue Transglutaminase AB IgA: 4 (<20 normal)

Tissue Transglutaminase AB IgG: 6 (<20 normal)

Here's what we have going on:

- Me (mom) has confirmed Celiac.

- He has had stomach trouble as far back as I can remember and had an endoscopy about 4 years ago because of it. They found gastritis and put him on Prevacid (does that sound right?) for a little while.

- He has asthma.

- He had a migraine that put him in the ER at about age 12.

- He now has cluster migraines. I had him in the Dr. office for these a couple months ago. He said his brain was getting sharp pain on one side and it felt cold, lasting a couple minutes and then gone. Dr. said cluster migraines.

- He has some eczema by his right eye right now.

- He has joint pain and was put on vitamin B to help with that. He wrestles so the asthma and joins hurting are a pain in his butt. He's not taking the vitamin B anymore. He just took it for a while in the winter with an elbow or something. I honestly can't even remember... (Lucky I can remember yesterday - memory going downhill last couple years, sorry!)

- Was in the 90 percentiles during his childhood and was a big baby boy 9 lbs. 3 oz. His dad is 6' 2" and was over 10 lbs when he was born. I was told he'd be over 6 foot tall, too. He's currently 16, going on 17 in June now and 5' 8" and very, very skinny! He's like a twig, but eats me out of house and home!

- He has had fainting spells in the past.

I guess with his history, but test coming back negative, what would you do? Dr. put a note on his test results saying this doesn't mean he doesn't have it, he could still go have a biopsy. Would you just go gluten-free with all these symptoms and not go through the endoscopy to avoid putting him through all that, again? Would you go get the endoscopy done? What if it's too soon to tell? Are there other tests you would have or I could have run to help figure things out? Just need a little advice from someone who has been here. Lord knows I do not want him to have it, but I do not want him to gain a new problem every year of his life either.

Thank you in advance for any suggestions or knowledge you can provide to help me make the right decision.

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I have one celiac child and one not. Until the blood work on the other child shows celiac, I am not going gluten free with her. But that's just me. But my father had cluster migrain headaches all growing up. They did not sound anything like your sons but they may not all be the same. They are also called the "suicide headache" because of how severe they are. I have seen him 250 pounds in the floor banging his head on the wall during an episode. My dad could put a dime on the spot that hurt and it would hurt for hours. He would get them usually in the fall and then they'd go away for months and even years before they returned (hence the name clusters) I do have some advice that might help that that I have learned from my dad. 1) If you or anyone around him smokes...stop. My dad found out that smoke triggered his. Something about narrowing blood vessels in that area. Even after he stopped smoking, he had them for years. He doesn't even like to sit around a fire. The last one he had was 14 years ago and it was because I had made a fire in my new apartment with those logs you buy at the store. Something about that smoke made him have one and he had been headache free for about 3 years at that time. Smoke triggers them. 2) During these headaches, breathing straight oxygen helped. We had a rented oxygen tank in our living room during cluster season. When he felt them coming on, he could head them off. But if your son's only last a few minutes then it wouldn't help much. But if they last a long time, then investing in an oxygen tank could help. Anyway, sorry not much help with the celiac but just wanted to give my sympathy if he really has clusters.

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Thank you for that. I will keep that in mind. He says it stops him dead in his tracks they hurt so bad - he can't move. Right now, yes, they only last a few minutes. He declined a preventative since it only last a few minutes. Dr. did say they would come more in spring and fall. No one here smokes so that is a good thing. I will watch for that however, if we are ever near a bonfire or something. You provided a lot of insight into the clusters that may help him, so thank you for that.

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Has anyone had a child with a negative result, but who was actually positive or became positive later?

Still looking for an answer from someone with experience who dealt with negative testing, but a lot of symptoms with no answers.

Did your negative blood work stand strong and your child ended up fine? Did they really have it? What are the chances of positive endoscopy and negative blood work? Would you do endo if your blood work was negative and your child had symptoms like my child? Would you put them on the diet anyway because of all the problems? Would you not due to the blood work being negative?

I don't know how often this happens. I don't know the stats. I don't know what others have done and regret doing or not doing now that they know what they know. I am brand new to this. I don't know what to do. I need guidance, please. Help. :(

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I know from reading this forum that lots of kids have negative bloodwork and still end up with positive biopsies. You could consider running a genetic screen as your next step if you are still torn. If his test comes back with the genes associated with Celiac, with his list of symptoms, the next logical step would be endoscopy, even with the negative bloodwork.

My DS, 22 months, just had bloodwork done 2 weeks ago, which came back negative. Children have a higher rate of false negatives from bloodwork, and while it's a good screening tool, it certainly doesn't even catch all adult cases. Since my GI won't order genetic testing unless they get a "questionable" result from biopsy, we chose to go with the biopsy and endoscopy first, since we have years of trying to navigate school and other things that will need to make accomodations for him if he is Celiac, and that "piece of paper" will open doors that not having it would keep shut. Regardless of what our results are, I'm trialing him on a gluten-free diet to see if he has improvement, but it was important to me to first try for the official diagnosis.

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You can be gluten intolerant with out being celiac. I am celiac and my son is gluten intolerant. He has seizures, food allergies and chemical sensitivities. He always had stomach and joint pain. He is so much better now that we are gluten free. But we actually had to go a bit further to get better. We are grain free. We follow a paleo diet and it has helped way more than just gluten free

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Thank you so much for those responses. I just want to be a good mom and make the best choices! This is a hard one. My gut feeling tells me to get him off it and every time I don't listen to the little voice in head, I regret it. I talked to him about it and he said he wants to go gluten-free (after this box of cookies, of course!) So, I think we are just going ahead with it. Personally, I think he is hoping he will bulk up for wrestling since he's so skinny! I would like to see some symptoms disappear. Time will tell. He's old enough to help make this choice. That you for your guidance.

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I would do the endoscopy to TRY to get a dx. It may help him stay committed down the line if he knows cheating is in no way an option. As soon as the endo is done, have him go gluten-free. Hopefully he will cooperate!

I got a few cluster headaches shortly before my dx. Worst pain of my life. Haven't had any since going gluten-free. As I only had a few, I can't say for sure that they are related, but I don't doubt it.

Anyone who is on prevacid should be on a gluten-free diet IMO. It isn't normal for the body to send acid up your throat. Acid inhibitors have some serious long term effects, and it would be well worth it if going gluten-free eliminated his need for them!

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I guess with his history, but test coming back negative, what would you do? Dr. put a note on his test results saying this doesn't mean he doesn't have it, he could still go have a biopsy. Would you just go gluten-free with all these symptoms and not go through the endoscopy to avoid putting him through all that, again? Would you go get the endoscopy done?

Does the doctor know all of his history that you listed for us?

After my daughter was diagnosed, my son was screened. He had one number (total IGA - not specific for celiac) that came back a little high. Our doctor would have totally written it off except that my son is small. He didn't want to do an endoscopy because he thought there would be a high chance that it would be negative as well. My daughter was gluten free for several months by that time. All my cooking and baking was gluten free. I offered to trial him gluten free for a while. The doc jumped at this. He said he doesn't usually offer that as a choice because most people won't do it(or won't do it well) as a diagnostic tool. If my son had responded to the diet (he did not), the doc would have given him an official diagnosis based on that alone.

You might want to talk to the doc about your son's symptoms and see if he will diagnose based on response to a trial diet. (I would make it a 6 month trial.) The fact that he put a note in his file and is offering an endoscopy leads me to believe he might be open to something like this. I think pursuing a formal diagnosis is important for a kid that will help when it's time to deal with schools/colleges. Also to keep the kids committed to the diet (some kids need it, some kids don't, some kids will cheat even with an official diagnosis). You may need to keep a log of symptoms during the trial to show if it helps or not and also chart any weight/height changes.

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I don't see a total IgA listed....without which you IgA testing is pointless.

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I don't see a total IgA listed....without which you IgA testing is pointless.

If he was IgA deficient (which is why you test total IgA), they would need to test IgG . . . and they did that.

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Thank you for all the wonderful responses! I was afraid of putting him through and the biopsy coming back negative. I guess I don't know it will. Just seems I showed so late in life at 38 and my IGA was 1 point over at this age. I just felt if blood work was negative at this point, endo probably would be, too, although I am just assuming. I like the idea of talking to the Dr. about diagnosing based on trial diet. I think I will do that. I understand about confirming so they don't deviate from diet and to get an official diagnosis. Just keep thinking he'll take after mom and it won't really show until later. He just has a lot of things going on that have been unexplained and confusing to even our Dr. and this may be our answer. I'll keep you posted on how it goes. Thank you all so much!!!

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We have the opposite problem with our almost 8 year old- she had positive blood work but a normal biopsy. Finding the right GI dr that is supportive and willing to try the diet, or diagnose without the "gold standard" biopsy result is key- I am actually getting another opinion from a new pediatric GI because I am not fond of the one I took her to, that did her biopsy- he was nice enough, but totally dismissed her having celiac because her biopsy was normal- even though I have celiac, AND her blood test was elevated for celiac!! He told me to continue her diet as usual and follow up in a few years or "when symptoms arise"! What?? He basically said she likely has latent celiac, which is elevating her antibodies but not yet active in her body. But why wait till there IS damage?

I think a gluten free trial in your case sounds like the way to go, but I understand wanting a diagnosis- that is where we are. If you choose to do the endoscopy, know that it is very easy and quick, and I was worried about it but my daughter did amazingly well and was back to her usual self within hours and eating like crazy that night :) so if it makes you feel better to rule it out in that way, I would do that.

I should also add that her only "symptom" is recurrent joint pain for about 18 months- my own celiac doc said this is a strong celiac symptom in children especially.

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My younger son has celiac (diagnosed by biopsy) and I was diagnosed with gluten intolerance (positive blood, negative endoscopy). I know I have celiac too, regardless of the test. All my symptoms (there were many) have gone away now that we are gluten free. My older son tested negative on all the blood tests but our doctor wanted him to have the endoscopy anyway (she is a celiac specialist and knows the blood tests are often wrong.) He has no real symptoms except that he is very moody and had some tooth enamel issues. His biopsy was negative and she told us to have him tested (blood) every 2 years - sooner if he starts showing any symptoms. He still eats gluten (out of the house) but not nearly as much as before.

With your diagnosis AND his symptoms, it seems likely that he is (at lest) gluten intolerant. I would have a biopsy done (just based on symptoms) and then start the diet with him no matter what the result. If his symptoms go away, you will know for sure.

Sometime it is hard to stick to the diet if you don't have a firm diagnosis. Be sure to give it a good try - 100% for 2-3 months before you decide.

Cara

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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