Need Advice And Encouragment

[Mama of 6]

Hi all, I posted here a few months back when I first went Gluten Free. I had some questions that hopefully can get answered. I have never truly been diagnosed with any gluten problems and have had the intire celiacs panel (i think) and a endo. at the same time I had my sons blood work done everything was normal except he has a low IGA level. We both went on a strict gluten-free diet in April it worked wonders for the both of us. I was completly symptom free for months untill about a month ago. I started getting horrible leg pain again (does this happen to anyone else?) It was just out of the blue I din't have any change in eating, and still just as strict. Also my son had is IGA level checked again and it is even lower down to a 7 now.The dr said to take him off the gluten-free diet to see if it goes up. I also started consuming gluten again. So here is my question, is it normal to start getting symptoms again after being symptom free for months? Should I still have hope that the diet will still work if I stick with it? I need help! I have been tested for everything (vitamens, lupus, celiacs, the list goes on) the only thing I haven't been tested for is MS. I have asked several times to be tested and the dr said he really doesn't think its MS and my insurance won't cover a MRI. I have had so many dr brush it off as Fibromyalgia, I just don't understand why it cleared up completly when off of gluten. If anyone has insight I would love to hear it. Thank you for taking the time to read this.

[guest134]

What were your symptoms? Are you sure you didn't just go through a placebo affect that is now wearing off? Seems to me if you had an appropriate endoscopy taking enough samples and the blood work that you simply don't have celiacs. Did you have a gene test? That being said if you feel better off gluten and it makes you happy than stay that way, regardless if it is in your head or not it is your life and you should do what makes you feel best.

I think we will be able to help you a bit better once you give us a list of your symptoms.

[GFinDC]

Seems like you could find out if gluten is the problem by going back on the gluten-free diet. Yes, other people have reported msucle pains due to gluten. Some of them severe There are 300 symptoms for celiac so it covers an awful lot of possibilities.

[GottaSki]

Welcome Back Mama!

First, if you and your son are testing very low Total IgA than none of the IgA based antibody tests in the celiac panel will be accurate. Request a written or electronic copy of what tests were run for both of you. The IgG based antibody tests are essential with low Total IgA and there should be a Total IgG run as well - which is rare for doctors to order, because it is possible to have low Total IgG as well - which would make the entire celiac panel inaccurate for you.

Is the doctor that suggested the return to gluten based on a lower Total IgA the same doctor that conducted your endoscopy? The reason I ask is his advice to return to gluten ingestion is bad advice and I wonder if he was qualified to accurately conduct your endoscopic biopsies. It would be wise to request a copy of all medical tests, including endoscopy.

It is not uncommon to have improved symptoms when newly gluten free and to have either some symptoms return or worsen in severity. I do not agree with the "placebo" comment given your reference to Fibromyalgia.

It is also common to become intolerant of other groups of foods while your digestive system is healing. Dairy, Grains, Legumes, Nuts, Seeds and Nightshades can be problematic for different folks - often these intolerances are temporary and once the gut is completely healed they return to eating them with no problems.

I suggest you remove all gluten again and start a food/symptom log - keeping track of symptoms is important because some reactions are not immediate and looking back over the three days before symptoms appeared can be helpful.

Given your "fibro" symptoms, I also suggest you try removing the nightshade group - tomato, potato (sweet potato/yams are ok to eat), all peppers (black pepper/corns are ok - but no pepper spices, paprika, bell peppers, etc) and eggplant as many folks with muscle/joint pain find relief when this group is removed.

The road to healing is not always as simple as remove gluten and you are fine - despite prevailing medical theory that all we have to do is remove gluten to heal -- especially in cases where there is many years of damage from undiagnosed Celiac Disease.

Hang in there....trust your gut

[IrishHeart]

I would never suggest that symptom resolution after being gluten-free for a period is a "placebo effect".

I would think it is an indicator that gluten is a problem and removing it gave you relief..

GottaSki has said everything I would offer.

Why you have pain now is anyone's guess, but the truth is, it takes many months, even years for symptoms to resolve.

If your inflammatory markers (c-reactive protein, ANA, sed rate) are normal, that is perplexing and often why doctors slap the fibro label on people---especially women. I will refrain from making any more comments about this syndrome as so many celiacs are misdiagnosed with it and left to suffer unnecessarily (myself included) and if I get started, it will be a long rant no one needs to hear.

Many people test negative for celiac, but suffer terrible symptoms from gluten. Only you can decide what's best for you.

[Mama of 6]

Thanks you everyone for replying! I know without a doubt that it is not a placebo effect. It's a huge thing for a person to go from huge amounts of pain to no pain in a matter of days...the change would have to be related to something. I do have some results from tests I will post them:

My labs

Gliadin IgA 2.8 Normal 19 and lower

Gliadin IgG 4.9 Normal 19 and lower

IgA103 normal 68-359

TTG IgA 2.7 normal 19 and lower

Endomysial IgA Negative

My sons

TTG IgA 2.2 normal 19 and under

TTG IgA negative

IgA 16 normal 27-168 (this is down to 7 now)

Again I thank you guys so much you have always been such a help. We have re-started the diet today and I am going to start a journal to find any other culprits. Also it is not the same dr that performed the test for the endo on me and the blood work on my son. However all of the Dr think I am CRAZY!!!

[GottaSki]

Well I think doctors with no training or up-to-date knowledge of Celiac Disease and Non-Celiac Gluten Intolerance are CRAZY

It is shameful.

You have come to the right place, let us know if we can help!