Pre-test

[sandpiper]

Hi everyone,

This goes out to you all with the experience of yourselfs and families in helping to encourage our oldest son to get tested/or at least do a short trial run of taking gluten out of his diet.

Our oldest displays many of the symptoms of being gluten or a true celiac. The big ones are almost daily headaches, that can range from being mangeable to down and out migranes. He also has tooth discloration (his dentist, just told him last week, you must have been very sick when you were around five or six) this is the first time any dentist has brought this up, this is a new dentist by the way, and I believe said that he had some calcium lost, please let me know if that sounds right. He also which really concerns me has, foot pain neuropathy, and has had four different surgeries in the last two years that still has not made a difference in his daily pain (which is bad) and he has to take heavy duty pain medicines. He is also depressed and has some big mood swings ( don't know if this is related to his pain meds). He is thirty-four years old, and this is not getting any better for him, it breaks our hearts. I might mentioned we are pretty sure that he has sleep apena.

Our family history is big time thyroid diseases, myself, have graves disease and believe that I do have celiac disease, I was not tested until too late, I had been on the diet for two years or more, and did try to challenge it back in but I could only handle a couple of weeks and I felt terrible. Our youngest son is gluten free and when he gets anything close to gluten he does not feel well ( his story is longer with his health, and I could message this some time later, if you would like). Our mom has thyroid disease and our grandmother had graves disease. I have thought for a long time that our mother is a celiac, I can't get her to be tested.

Please let me know if any of you have had the problems with your history, especially the teeth and the neuropathy. Thank you for all of your input and suggestions a head of the returns.

Best to all of you,

Susie

[happygirl]

Good information from Columbia University:

Open Original Shared Link

"The diagnosis may be established because of non-gastrointestinal manifestations of the disease. These include dermatitis herpetiformis (DH), neurological symptoms such as peripheral neuropathy, ataxia, or epilepsy, frequently with occipital calcifications. Other, less common presentations include apthous stomatitis, arthritis, dental enamel defects, and abnormal liver chemistries."

The tests for a Celiac blood screen are:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

[AliB]

I would like my son to get tested too. He is 27. He suffers a lot with brain fog, has had terrible problems with his teeth and also thinks he may have sleep apnea. He has suffered with depression but more so when he was a teenager.

Although he did not have any growth problems - in fact just the opposite as he is 6'4" tall, he did have ADD as a child and used to have 'Tourette's' type twitches which he seems to have grown out of, but which may have been indicative of malabsorption issues.

How long has your son had his problems?

I am very confident that my Mother was true Celiac but it was not identified before she died (of multiple organ failure, probably due to malabsorption issues). My father was also almost certainly very gluten intolerant. I am possibly celiac or at least extremely GI - my blood test was negative and I couldn't wait for a biopsy as the pain in my stomach was so great I had to get off gluten as soon as I realised why I was suffering. My husband suffers with Osteo-arthritis and Fibromyalgia amongst other things which could also be gluten-related. I am diabetic.

My daughter has had a lot of problems with depression, anxiety and mood swings, and my 2 grandsons, her boys, both have issues which may well be linked to GI or Celiac, one with stomach problems (we are just getting him on to a gluten-free diet (and may possibly need to restrict dairy too) to see what happens) and the little one is small for his age and has learning delay. Their Dad also has ongoing digestive problems - poor kids, they are getting it from all angles!

The problem with stopping gluten is, as you have found, that you don't want to re-introduce it in order to be tested, so it may be better for him to see if he can get that done now before he goes gluten-free. Although I couldn't wait for the biopsy I did have the blood test before going gluten-free. Just be assured though, that none of the tests are foolproof - even if they all come back negative, it does not mean that he is not Celiac or at least severely GI. The only real proof at the end of the day is in the 'pudding' - a gluten-free pudding................and breakfast, dinner and tea!

[Ursa Major]

You are right, every single symptom your son has could be caused by gluten. Including the mood swings, depression and tooth discolouration.

Let him know that if indeed he has undiagnosed celiac disease, he will eventually end up with worse problems than he already has, including intestinal cancer, if he will keep eating gluten.

And that on a gluten-free diet, all of his problems might clear up (even though, there may be residual damage, as it seems his neuropathy is quite bad, and he has already has surgeries that are irreversible).

[nikky]

your absolutely right, your son needs to get tested, his symptoms are classic for coeliac disease.

if you need help persuading him get him to talk to some people on here and if he is young then he can join www.celiacteens.com, where teens and young adults can get advice and support from people their own age.

[sandpiper]

Good information from Columbia University:

Open Original Shared Link

"The diagnosis may be established because of non-gastrointestinal manifestations of the disease. These include dermatitis herpetiformis (DH), neurological symptoms such as peripheral neuropathy, ataxia, or epilepsy, frequently with occipital calcifications. Other, less common presentations include apthous stomatitis, arthritis, dental enamel defects, and abnormal liver chemistries."

The tests for a Celiac blood screen are:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

Hi Happygirl,

Thank you for your return and the postive advice on the not so typical symptoms one sees with this disease, and being over-looked with the correct dx.

Would the occipital calcifications include the same end results as migranes? Our son has almost daily headaches, and some would be the true type migranes, which puts him down and out for the count of most of the day. Have you talked with many who have had this happen with their main symptom? Also with the dental enamel defects is this from a loss of calcium in the teeth, how would the enamel defects appear? I am constantly learning about this disease and it's profound effects it has on one's life from the nutritional stand point and how our bodies suffer at the cellular level.

We do hope that our son will decide to investigate his symptoms and not dismiss them as the doctors already have. When his body is practically screaming out to him, you would think the doctors could hear. It is a journey though for us all and with the help of forums as this and people who have had their experiences and now reach out to help others in need is one of our most valuable resources.

Thank you so much for your great input and help, I look forward to connecting with my new friends here for all of their much needed advice.

Susie

[sandpiper]

your absolutely right, your son needs to get tested, his symptoms are classic for coeliac disease.

if you need help persuading him get him to talk to some people on here and if he is young then he can join www.celiacteens.com, where teens and young adults can get advice and support from people their own age.

Hi Nikky,

Thank you Nikky for the great suggestions about talking with some of the others here. David is 35, so I am not sure about this particular approach for him and his age. Just to get him started and to stay on track with his desire to check this possible link and connecting the dots will be the very most we can hope for him now. Please keep the great thoughts coming, that was very sweet of you, and so right on with how one (or more) can help each other.

Take care,

Susie

[sandpiper]

Hi AliB,

Thank you for your family and your own personal history with gluten and all of the symptoms you have been through it does help to hear about it. I am sorry that I have not been in contact sooner, I was down for awhile with some bug that lasted for a few days. I always try and get back with people when they are kind enough to respond and help out.

It really does sound as if your family has had their share (and still are) with the problems that go along with being glutened. I did the same as you did with going gluten free and then waiting too long to do the testing, I also did not have the biopsy, and the blood test came back negative. This is really a on-going lesson of the right and wrongs for ruling the disease out. I do agree and that is probably almost a 100% for us all that taking the gluten out and following the diet to the letter is often the best way and the best "medicine", since alot of us here also have been over-looked and placed on too many drugs to mask the actual problem. I do love how you said in your post (the end) in the pudding.........and breakfast, dinner and tea, how cute was that!! Perfect!

I do feel for your family and especially the little ones, my heart goes out to you and to them, to have to suffer and to do this needlessly when we can change it so easily with our diets. What a blessing though when you think of it and your continual knowledge and own-awareness to be able to help your family and others. It is great to hear that they are making the changes. I do hope for this with our son. It is difficult though to even talk to him (most of the time), so if I can gather more insight to the experience of others who have had to walk this path, it is more of the type of concrete information that might nudge and encourage him to take more of the steps for his healing.

If you don't mind me asking how old was your mother when she passed? Our mom is 86, but as I mentioned she does seem to have some of the problems connected with gluten. Your son, I wanted to add is tall like ours, who is 6'2, and very thin, (although, he does not eat alot), but I will tell you he loves, LOVES pizza, and he could probably live on it (actually, I think he does), and chocolate milk. I see a pattern with our youngest grandson, and him having immediate reactions to cows milk and peanut butter, and I do believe wheat, he does the classic pushing up on the nose, and will also display being hyper. I can't tell you (know that you do understand though) how this will always upset me to see and that I just want to help him so badly. He does though when he comes to visit, which is atleast once a week never, never eats gluten, only whole foods. Okay, I do make him chocolate chip cookies (gluten-free), so I do try and help him in these ways. I have tried to talk to his mom and dad, but to no avail, so he (they all are) in my prayers and hope to see these food behaviors start to turn around.

AliB, when did you become diabetic? Are you only on medicine for this? Do you have anything going on with your thyroid? Hopefully you have a great doctor to check it out with all of the right panels, not just the standard ones.

Have you had any gene testing done? I have been doing some reading on the connection of celiac genes and thyroid genes, which if I am reading correctly are very close. If anyone here has more information on this I would love to hear about it. I realize if you don't have the gene then you don't have celiac, but could have the intolerance. Maybe another good way of testing just to rule out the autoimmune connection?

Better close for now, I do hope for the very best for you and your family, again it sounds as if you are doing the best that a wife/mom/grandmom can do for them, keep it up.

Take care, talk to you soon,

Susie