MomBTired

I once got paranoid about my kiddos numbers, then as he was diagnosed with other autoimmune diseases, I was told to stop looking at the numbers and watch the symptoms. He's been totally gluten free for almost 2 years now but I was told his test would probably not get to normal limits because the other diseases affect that number. My son is one of the extreme cases though. He has struggled with gastro problems way before Celiac. If another doctor tells you that is isn't Celiac, don't eat gluten again, get another opinion.

Hey, I actually have some answers for some of you. My son has Celiac, horrible pain, muscle spasams and twitches like crazy, went through 14 crazy doctor years with him and it took that one neurologist who said, of course he's a mess, more than 60% of people with Celiac disease have small fiber neuropathy. His nerve/skin biopsy came back positive. Celiac and neuropathy DO go together. This doctor told me if you have Celiac, it's not Fibromyalgia, it's this form of neuropathy. Years ago, he had a colonic manometry which showed the nerves were not functioning in his colon, so it eventually was removed. No one tried to figure out why. All this is rare in pediatrics. How rare? We didn't know he had Celiac until he dermatitis herpetiformis showed up. Pediatric derm never treated it before, gave him methemaglobinemia. Switched his meds then tore up what was left of his gastro system. Switched hospitals for derm and told her creams only. I had enough.

So after it all, my son has Vit D deficiency, iron deficiency, Celiac, DH, asthma, GERD, Small Fiber Neuropathy, recently positive for autonomic dysfunction (autonomic Neuropathy), Hashimoto's disease, POTS, sleep apnea, PTSD (not sure why, dorks!), throw in a little anxiety problems. All found positive in tests. Now with the gastro issues, my son has had more scopes than an average 80 yr old. He didn't come up positive with Celiac until almost 3 years ago. That was around 10 years with negative results. Now he's so extremely sensitive he breaks out with the blisters.

If I were you, I think I would get second opinions from another group of doctors in another place. It took 14 years for someone to figure out my son. Peds was so completely clueless, he had to be an adult before someone figured it out.

No, he was first diagnosed with the skin biopsy. He has an autoimmune skin disease that can come along with Celiac. So after that he had the scope and bloodwork. I don't know how many biopsies he had. Probably just one since he was so swollen. All the other tests were positive. He does black out due to his blood pressure dropping when he stands. He was diagnosed with POTS last week after having a tilt table test. As little as you eat and how much you have stools could lead to dehydration which would make you thirsty and crave salt. My son can't keep up with water and salt since he doesn't have a colon. You are ity bity, wouldn't take much.

Misread then erased my comment since I can't find delete

Uh wow, wish my son was this detailed. If he was going to share his story, it would simply be, "life sucks!" So my 20 yr old has Celiac Disease. He went years of going through gastro problems, many MANY scopes and not until 2 years ago, did he come up positive for Celiac. He was first diagnosed from a skin biopsy that ended up being dermatitis herpetiformis. The gastro doctor didn't believe that so told him to not stop eating gluten until he was scoped again. The night before the scope, our entire meal was gluten. He was so swollen inside that the scope scratched him a little.

Of course, him being male, he doesn't have all the girly stuff, but he went through years of gastric tube clean outs because he was impacted all the time. It was so bad that his colon was removed after a test showed that the nerves were not functioning in his colon. He also has Hashimoto's Disease so that makes him up to 3 autoimmune diseases. They like to hang together. Now with Celiac and more severe with not having a colon, vitamin deficiencies. Several years ago, he was diagnosed with Fibromyalgia, which he doesn't have since this January he was diagnosed with Small Fiber Neuropathy from a nerve biopsy. Just last week he was diagnosed with POTS and Autonomic Neuropathy.

Now with this all being said and not sure I read all you put up there very well, but I don't think I saw that you were tested for Vitamin D deficincy. I also would get your butt (pun intended) to a neurologist. All my son's gastro problems were nerve related other than the Celiac. Because he doesn't have a colon, he doesn't react in his gastro system, he gets blisters.

He gets painful Charlie horses in abnormal locations, but the feet can be very bad. You are getting up so much to pee because you are drinking so much. I'm a waterholic and get up at least twice a night. Love my water! And all that bowel stuff, sounds like what he went through when he was constipated at the beginning.

I would recommend a neurologist consult

We kind of went through something like this. My son's best friend got married and she was upset he wouldn't be able to have wedding cake. I mean, it was stressing out the bride. I told her I would go get him a cupcake to bring. Then life was all good   As far as his parties go, he's 19 so at the moment he just brings snacks they all can eat. Most Frito Lay is gluten free so he pretty much goes everywhere with a bag of Ranch Doritos

Son was homeschooled because of all the undiscovered now discovered medical issues. He decided he will be adopting later in life because he doesn't want his kids to go through anything he has. He suffered so long, it's amazing that he even has a small intestine!

You can still use the wipes, I do. I don't use a sponge. I use dishcloths instead and change it and the kitchen towel before I make dinner. Everything goes in the dishwasher and if it can't, gluten won't touch it. It's however you clean. I like the wipes since they go in the trash after

Yup, I know. He's 19 and doesn't care what shape they are

I didn't read all the comments yet, but I am 45, not celiac and having woman issues also. It's part of menopause. Ask if you can skip the sugar pill week, it helped me. I thought I was hemorrhaging last month.

You need to find yourself snacks that you like that are gluten free. My son is 19 and Celiac. After his scope and when he was still out, Dr told me he was definitely positive and needed to go gluten free, the first thing I looked at on my phone was Reese Peanut Butter cups gluten free. Fortunately they are gluten-free. My kiddo would have had to be put in the psych dept if he couldn't have them anymore. Just do a little research.

Which, by the way, most of your symptoms I have, was told it's perimenopause. It's miserable

Yup and yes. My son eats the littlest bit of gluten, breaks out with DH and itches like crazy. I don't know where you live but you need to be careful about eating fries out. They share fries in the vats with gluten stuff. My son is safe here at a few restaurants for fries. Chick Fil A is safe, Red Robin and at home, most Ore Ida types are gluten free

Some of the great people here taught me something. I was going crazy like you. My son is down to 32 as his lowest in 2 years. Found out that the number can be elevated by his thyroiditis and his gastro doctor doesn't know that. So other autoimmune diseases can keep it high and judging by the people here, think it's rare to only have Celiac

Here's a decent article about it, My son is an overachiever and has the rarer form

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Took forever for them to figure out what my son has. After a nerve biopsy rarely done not to mention another test people don't generally get but between the two, showed his nerves in his colon were dead and the biopsy showed autonomic small fiber neuropathy. Apparently, if you have autoimmune diseases, pretty good chance you have this form of neuropathy, especially if you get diagnosed with fibro. His neuromuscular doctor told me that anyone with Celiac that goes into his office with all his symptoms, he diagnoses without the biopsy, my son was just his proof to peds to why it's not necessary. Thing is, the nerve diseases most likely came before the celiac, which has a few scratching their heads.

My kiddo has DH and was diagnosed with Celiac when that biopsy came back positive, then the bloodwork and scope were done to confirm. They were all positive. My son has a lot of gastro issues and has many scopes over the years. Every single one was negative until the DH showed up

Sadly you sound so much like my son, he's turning 20. I would get the scope just in case it's something else and to confirm it is celiac. When it does come back positive, also find yourself a good neuromuscular doctor.

Penguin, many things can cause constipation. Celiac did not cause my son's, it was a nerve disease that did. My son had absolutely no symptoms of celiac at all until the dermatitis herpetaformis showed it's ugly blisters up. Do not get frustrated that she wants to eat the bran flakes, if it helps her right now while she waits for help, so be it. It's better she has gluten in her system for the tests anyways.

His scopes were always normal, biopsies also until this last one where he was so inflamed he was cut by the scope and the biopsy was positive also

Extreme mama here. My son was so sick, his gastro system was a mess, had more scopes than an 80 year old and didn't have a positive Celiac test for uhhh 8 or 9 years on that battle. His constipation was so bad that his large intestine was removed. A colonic manometry showed that his nerves were dead. Took many years to get the why to that question answered so don't give up. In America, you don't have a problem getting in but if they do not have a clear answer, they call you psychological and also just treat the symptoms.

My son has celiac, I do not and I am addicted to bread. I sacrificed my bread for my son   When we eat out, I get gluten. When I am at work, I get gluten. Our dinners are pretty much completely gluten free except pasta night when we cook together. He likes leftovers

Read about small fiber neuropathy. My son has the automatic one. His neuromuscular doctor told us that many people who have celiac end up with this form of neuropathy.

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Time for a new doctor.

You really need to see an allergist and gastroenterologist

My son is 19 and has been through an incredible ordeal with many doctors. It is hard to shorten the horrible 14 years he has been through this but here I go. It started with asthma and allergies. He was picking up every single illness the kids in school got, all year long. Pneumonia 7 times, chicken pox 3 times and yes, he had the shots. After 6 times of pneumonia, it was found out that his stomach valve was not functioning correctly and what was going in his mouth, was partially going in his lungs. He had a fundo done. Next up was his colon. He was getting impacted so much that he had around 2 hospital stays a month for a gastric tube clean out. We were sent to Ohio for a colonic manometry which showed significant nerve damage in his colon. His large intestine was removed back in 7th grade. He went through numbness in his lower legs and some in his hands for a while. You cannot touch the kid, it hurts. Doctors were telling me that there was nothing wrong with him, that his pain was psychological. They sent him to a specialized children's hospital here for all day PT to get him up and going. While there, they figured out that his knee caps were dislocating when he walked which led to more surgery. Another symptom was that he was blacking out. I was once again told it was psychological but it happened at this place and took his blood pressure. It was incredibly low. He gets orthostatic. So next he was sent to a rheumatologist who figured out that he had vitamin deficiencies and Hashimoto's disease and labeled him with fibromyalgia.

He started breaking out with blisters all over his body. Pediatrics set us up with emergency appointments with allergy and dermatology. Prednisone helped but he couldn't be on it that high dose for long. It was almost overlooked. The dermatology fellow/resident assisting the doctor requested to do a skin biopsy. The doctor said it didn't need to be done but it was good practice for her. So it OF COURSE came back positive for dermatitis herpetaformis. I guess it is rare in peds because they put him on Dapsone and was running the wrong blood tests while monitoring the drug. He ended up with methemaglobianemia. He was then sent to an adult dermatologist who put him on a medication which attacked his already messed up gastro system. So that' right, I switched doctors and he has a topical powerful steroid cream now if he needs it.

Meanwhile,  his muscle spasms and tremors were getting worse and worse. He was tipping over while standing and his gait is very abnormal. Even though his neurologist believed that it was fibro and psychological pain, he still referred him for a nerve biopsy. So he apparently did not understand the results from April of 2014. In January of 2015, after being referred to the doctor who did the biopsy told us that it was POSITIVE. I found out that around 50% of people with celiac disease have small fiber neuropathy. After looking up the kind he has, autonomic small fiber neuropathy, it was like reading a book about his past 14 years, So when my son was 8, if he went to adult doctors, he would have probably been diagnosed years ago

So after all these years of being told that some of these things are psychological when they were not. he has anxiety problems and PTSD, geeeeeeee don't know why. Now that we know everything, we are checking into getting him a service doggie. He's turning 20 and I think if I get him a service dog, I could actually work more. He is terrified of doctors, not sure why, but I think the dog could replace me at some of the doctor appointments

So why I share, if you are Celiac, you might want to look up small fiber neuropathy. If you are Celiac, and were labeled with fibro, you might want to see a neuromuscular specialist