In Shock!

[boysmom8]

Hi. I have been reading the board like crazy and I feel so totally ignorant! I have two kids with celiac disease(or so they say) it could be more I think!!

When we had everyone tested(including my husband and myself) the only test they did was the anti endomysial antibody test(spelling is wrong I'm sure). They were negative for that antibody but if I am reading correctly it could be a false negative?????? My son who has symptoms also had a biopsy but he was so young, could it be that we should have had him retested before??? I have another son who has eczema(or so we think) it looks horrible, smallish red raised patches on both legs and arms and sometimes on his buttocks. The same child also has asthma. He is a little on the chunky side and has a big belly. He also has bulky stools but don't look the same as my one son who went the longest with it undiagnosed.

I myself have been battling some strange malady...I have extreme fatigue(much worse with PMS) and muscle weakness, joint pain, dry itchy skin and sandpapery patches on face and forhead, depression. hair falling out, headaches, vision problems, numbness and tingling in hands, cold/hot spells and problems with gas and painful stomachaches and also acid reflux type symptoms. I also have(on and off) these little pimply itchy bumps that I get on my scalp. I have been tested for other things and the Dr is having me go see a rheumatologist(sp?) to rule out Lupus and fibromyalgia. I wonder though if it could be celiac disease?? Do my symptoms warrant going to the Dr again and asking for more testing?

I just feel so stupid! I thought I knew so much about celiac disease until now! Do you all realize the amount of folks out there that are Celiac and DON'T take very much care to be completly gluten-free?? I know a lady and her two kids that I made friends with(wrong thing to do with a newly diagnosed celiac) and she eats out regularly and uses the same toaster with both gluten-free and Reg bread and much more other "unsafe" practices that SHE convinced me were okay. Well, no more....I am going back to calling the companies about products and being much more careful about contamination. I was never blatant about letting my kids get gluten but I did get too comfortable, time to be more cautious.

Lori

[mytummyhurts]

I'm glad that you have learned so much from this board about cross contamination and how careful we really have to be. I would say that yes, your symptoms would warrant asking to be tested more. I don't know much about the testing. Hopefully somebody else will write about that. I don't know the names of what needs to be done.

[Carriefaith]

I have extreme fatigue(much worse with PMS) and muscle weakness, joint pain, dry itchy skin and sandpapery patches on face and forhead, depression. hair falling out, headaches, vision problems, numbness and tingling in hands, cold/hot spells and problems with gas and painful stomachaches and also acid reflux type symptoms. I also have(on and off) these little pimply itchy bumps that I get on my scalp.

Wow, I think you should get tested for sure, it's sounds like youcould have celiac disease symptoms and DH (Dermatitis Herpetiformis, ie. celiac associated skin condition). If you decide to get tested, make sure you ask for the celiac panel that has the tissue transglutamase test. Also, if you are eating gluten-free, the tests could be false negative.

[SueC]

Hi Lori,

You sound very much like me. I was diagnosed with celiac in April by bloodwork and endoscopy. I have been gluten-free for 13 weeks and still get muscle pain and tingling sensations. I was tested for Lupus but I don't have it. It just may be my intestine taking a long time to heal. I had complete atrophy of villi according to my endoscopy.

Definately get the entire celiac panel done, especially your ttg level. That will tell if you have intestinal damage. I have celiac and have ALL your symptoms.

Good luck

Sue

[Guest nini]

Lori, I just wanted to say too that I had all those symptoms prior to being dx with Celiac. Getting a positive dx was a life changer, for the better I might say... I'm off all of my medications except for blood pressure, and the dr. said he'd consider taking me off it once I hit my goal weight.

[Jnkmnky]

The book Dangerous Grains is really good. It's written in a very readable style. The authors talk about the health consequences of undiagnosed Celiac/gluten sensitivity. Aggravating your immune system with little accidents can have devastating effects. It's good you're going to be more vigilant with your children's diets.

[boysmom8]

Hi. Thanks for the replies. I just think it's got to be something I am eating. I am leaning more and more to celiac. I just ate a bit ago and now my stomach hurts. Not painfully hurting, just uncomfortable. I am going to call the Dr tomorrow and get an appt and get the testing done. What exactly is the panel I need to ask about again??

And also, IF it's celiac disease, why would PMS make the symptoms worse??? Is it just hormonal changes added to it and it just feels worse or do the hormones actuallly make it worse??

I am also going to make an appt. for at least 3 of the kids to have the testing done as well.

How many out there just end up going gluten-free for the whole family??? Should folks do that or try to do both? I was told NOT to do that since going off gluten can actually cause a reaction in those that don't have celiac disease if they eat gluten. But now I wonder if it won't benefit the whole family. (after the testing of course).

How come you all say you had/have very similar symptoms as me but Drs. don't think about celiac disease? It's much more prominent in the news and such since my two were diagnosed.

I do remember though being so angry with Drs. cause they didn't figure out Ben had Celiac for YEARS. We took him to Dr after Dr and the poor kid was always in the bathroom. He was classic celiac with the pot belly and no muscle tone(he looked like a starving child-which he was). Now Ben has grown considerably but he has learning disabilities(that they cannot specify) and emotional problems. I blame him going for 5+ years undiagnosed.

Well, didn't mean to write a book. Take care all and thanks again!

[mytummyhurts]

How come you all say you had/have very similar symptoms as me but Drs. don't think about celiac disease? It's much more prominent in the news and such since my two were diagnosed.

I don't know if you have yet, but you should read Wheat Free Worry Free by Danna Korn (man I feel like I'm pushing this book all the time now). It has a section on doctors and why they don't seem to think about celiac disease. To summarize, they are taught (probably more in the past though) that celiac disease is rare and they are even then learn only a little about this disease. I do think though that more and more doctors are learning about it and realizing that it is not rare. I was one of the few lucky ones that was diagnosed the first time I went to the doctor for these symptoms. But it was my gynecologist that diagnosed me and even the GI doc I went to didn't know very much about celiac disease. Anyways, I found that book very helpful and interesting if you have not read it yet.

[Jnkmnky]

Boysmom,

I've tested neg for celiac disease, but believe I'm gluten sensitive. I do FAR better on a low/no gluten diet. I was dx with endometriosis after a year and half of excruicationg pain. I went gluten-free and the pain stopped within two weeks. No pain. zero. I recommend the book "Dangerous Grains" as it helps to more clearly define gluten sensitivity issues. My other non celiac disease kids have way less stomach aches now that they are also eating low/no gluten. Both of them tested neg for celiac disease. They eat gluten out at friend's homes, and out for dinner, and don't see a problem afterwards. I do for myself, so I've stopped eating gluten out. It shocks my system or something and I don't need that kind of pain. I've not heard of ANY health concerns in regards to a gluten free diet. The only thing to remember is to get a test for celiac disease prior to going gluten free. My celiac disease son had some learning issues. He repeated a grade. But he's fine otherwise. He's exactly one year behind where he should be. He's at the top of his class....now that he's been held back! He's in speech and has been evaluated for memory problems, word association problems, and poor physical coordination. They say he scored within a normal range for all of those areas of concern, so we're staying positive. These issues took awhile to resolve, but a dedicated school staff is indispensible.

[Guest nini]

How many out there just end up going gluten-free for the whole family??? Should folks do that or try to do both? I was told NOT to do that since going off gluten can actually cause a reaction in those that don't have celiac disease if they eat gluten. But now I wonder if it won't benefit the whole family. (after the testing of course).

IMHO if someone goes off gluten then has a reaction from consuming gluten REGARDLESS of positive celiac diagnosis, then that means that they most definitely are gluten intolerant. I think as they learn more about gluten, they are going to find that a Celiac diagnosis is NOT the only reason to be gluten free. That many more people would benefit from a gluten free diet than currently believed.

[egardner]

I have decided the whole world is really gluten intolerant, your body didn't need it to start with. Everyone I know gets an upset stomach once in awhile and it makes me curious....... Anywho, the books reccomended are very helpful to those seeking research, I read them both and learned a lot. By the way, my gyno said that celiac disease was probably the culprit for my horrible PMS and periods, she said being malnourished can really worsen things like that.

[Guest nini]

If everyone ISN'T Gluten Intolerant then why do products like Pepto Bismol and Immodium and any of those constipation meds have such popular advertisements??? C'mon, how many of you have heard the silly Pepto Bismol song?

[skbird]

Just wanted to mention that when I saw my doctor last month - first time since gluten-free (8 months later) and he said that I am doing the best of anyone he's recommended the diet to in 5 years. I was surprised, as I am not officially Celiac, but I think it's that people just aren't as compliant as I am, nor are they as sensitive to their symptoms. Really too bad. I think the information for newly diagnosed people should be better. They should, for instance, all be directed here.

Stephanie

[stef-the-kicking-cuty]

Hi Lori

wow ! ALL people in your family with symptoms sound exactly like me, except the dermatitis. Well, I at least think it could be dh with you, not lupus. You might wanna check that out.

I think, doctors don't know that much about celiac, because they don't get taught that much, when they go to school. That's because the Pharma industry doesn't educate them enough, cause there's no pill for it. Most people do better, while on a glutenfree diet. Therefore you can't make money out of it with a pill. Duh .

I say it over and over again. Sad, but true. Money rules the world...

[boysmom8]

hey(typing wiyh baby on lap so...). I took my son yesterday to his diabetes appt.The endocrinologist actually said that the medical community is debating about weather or not the routine screening of type 1 diabetics is necessary(for celiac disease) He said especially since most of the kids tested aren't even having symptoms. He said because of the dietary restrictions they are put under with both diabetes and celiac. He said if your son isn't having symptoms, you may want to evaluate the validity(sp?) of the diagnosis. I couldn't believe my ears. My son (this particular son) wasn't having symptoms that I noticed, but he was positive for the antibody and the biopsy showed damage. I told him that and he said well...I don't know. There isn't any proof that a gluten-free diet improves control of blood sugars. We don't know the long term affects of a gluten-free diet. What??????? I was really confused after that appt.

What ya'lls take on this???

[Guest nini]

The gluten-free diet is not supposed to control his blood sugars! The diabetic diet is... However, if he tested postive for Celiac, then he definitely has it, just because he doesn't have symptoms from it now, doesn't mean he won't in the future. Those kinds of statements from Dr.s make me so angry I could scream. I mean for cryin out loud, this is why they call it PRACTICING MEDICINE!!! Granted, he will have more dietary restrictions on him with diabetes than just a gluten-free diet, but his health in the long run will be so much better. AND there are so many great options out there.

One delicious snack I can think of right off the bat is the new Philly Swirl Sugar Free version of their sorbet Italian Ice Popsicles!

Good luck with it all, I know it's gotta be tough with the diabetes as well, and just my .02 cents, All the studies I've read have said there is a DEFINITE link between Diabetes and Celiac and that EVERYONE with type 1 diabetes should be tested for Celiac. WTH kind of debate is this Dr. talking about? Some dissent ion that some endocrinologists don't want to test for Celiac because of no symptoms???? The point of early screening is to PREVENT symptoms, by getting them on the proper diet ASAP and preventing any damage from gluten from occurring.

[KaitiUSA]

Well your son definitely has celiac and there is a major link between diabetes and celiac so this is one misinformed doctor. Doctors need to be questioned alot more ...I think that they think we are dumb and take what they say as the gospel or something These kind of doctors anger me. So what if there are no symptoms...why not catch it as soon as possible.

Nisla is right, celiac is not supposed to control the blood sugars....is this doctor nuts!!!

[Guest nini]

I LOVE YOU KAITI!!! (just had to say it!) I agree with you

[KaitiUSA]

I LOVE YOU KAITI!!! (just had to say it!) I agree with you

You are the best Nisla!!

[boysmom8]

Hi, I just couldn't believe he was saying it. BUT one thing the endocrinologist in Milwaukee that screened Seth almost 5 years ago said that even though he isn't having severe symptoms of celiac disease that it makes it harder to control blood sugars. I HAVE noticed when Seth gets gluten in his diet he does run higher blood sugars since the body's immue system is outta whack. Most diabetics run higher blood sugars when they are sick so it only makes sense that a undiagnosed celiac would also.

Drs. get on this ego trip and think they know EVERYTHING about EVERY CONDITION and that's wrong. Even my SIL who is a nurse says that she doesn't know much about diabetes or celiac because she works with spinal cord injury patients.

I need to get Seth and Ben into the G.I Dr. It's been a LONG time since they were seen.

[Katerific]

Hi, I'm new and I've been gluten-free for a whole 4 days! I'm a type II diabetic and for the last 2 days my blood sugar is totally, completely normal. I have eaten lots of non-gluten carbs, fruit, and beans and my BS is normal. If I would have eaten that much food before gluten-free, my BS would have been quite high. I can't believe it! My body knew it was sick. I went gluten-free because of severe fatigue, muscle and joint pain and constipation. My mother and sister both have celiac disease, but not all the same symptoms as me. My paternal grandmother claimed she was allergic to wheat so I may have the genes from both parents. I never thought that a person with constipation was a candidate for this disease. I started researching the web for my sister and the more I read the more I thought I have it too. I now feel terrific. The musicle and joint pain is gone and the constipation is resolving. I am so happy to be feeling better. Thanks everybody for posting your experiences. I am learning so much!

Katerific