13 replies to this topic

[Jamesmommy]

Hi all I am new here.My son is 8 year old.His name is James and he also has juvenile diabetes.Diagnosed at age 4.Here is my fear...We had his yearly blood work done and was told he needed to get a biopsy.They also mentioned if untreated the possibility of lymphoma..So you can see why I am terrified.

His IgA ttG antibodies at 210 Units(normal in reference lab <20) Now this is directly from the paper word for word.

Do I need to worry?? I mean I am already worried but I also have no idea what he is going into.What he will have to endure and what has God got in store for him.I am terrified of the thought that he might have cancer...

Any help and understanding I can get will be greatly appreciated.

Thank you

Gay Shackelford

[gf4life]

Hi Gay,

I'm a bit confused. Was he diagnosed with juvenile diabetes at age 4 or Celiac. And has he been on a gluten free diet? I'll wait for your answers before attempting to answer your questions, so I don't give you the wrong advice.

God bless,
Mariann

[tarnalberry]

Just for reference, the ttg results give you absolutely NO indication about cancer. There is not reason to be immediately concerned about an present case of cancer. Your doctor can certainly do the screen, but the issue is that DECADES of exposure to gluten in a celiac _can_ increase the _chance_ of developing intestinal cancer. It's no guarnatee, even then.

[Jamesmommy]

Thank you for getting back to me.

He was diagnosed with JD at 4 and this Celiac just came up a week ago..Does that help??


Gay

[hthorvald]

If it helps, I was diagnosed at the ripe old age of 51. Since April, I've had CT scans, colonoscopy, endoscopy and a barium swallow. They didn't find any evidence of any other abnormalities, let alone cancer. And I've had this disease since I was a child.

However, I wouldn't take our word for it, I'd recommend you call and talk to your doctor. Everyone's system and situation is different. Biopsies are the absolute way to determine celiac disease, not just lymphoma. This is done via endoscopy.

One of my children has a suppressed immune system since birth (nothing to do with Celiac), and has undergone 6 surgeries in his short life. So I understand the concern you have about James. Push your doctor to explain anything you don't understand and do it soon. Worrying, I know all to well, can cause additional stress.

Just my two cent's worth.

H.

[gf4life]

Jamesmommy,

If his bloodwork came back last week then I assume he is still on a gluten diet. Keep him on the gluten diet and get him scheduled for a biopsy right away. 210 is a high ttg level and could indicate a lot of intestinal damage. It would be better for him to have a clear diagnosis with the biospy.

And there is a connection to diabetes and celiac. You might just find that once he is on the gluten free diet that his diabetes will be more easily managed. Some people have even found the diet to make their diabetes symptoms go away completely.

I hope that they can do his test right away, so you won't have to wait too long. It is very important that you not start him on the diet right away, he needs to be on a gluten containing diet for the biopsy to be accurate.

And although there is an increased chance of getting intestinal cancer if you have untreated Celiac for many years, your son is very young and if he does have Celiac Disease, you are finding that out well before he has had a chance to develop any tumors. The gluten free diet will help him heal and reduce his chances of getting intestinal cancer to the same as the rest of the population. It is the people who go undiagnosed and untreated for decades that end up with cancer, not the kids. And even then only a handful of all the Celiacs actually do get it. Be very thankful that he is being tested early.

God bless,
Mariann

[Jamesmommy]

Mariann thank you so much for your quick answer.What has me so worried is that he has toldme since last year he had tummy aches but the doctor just told us to give him tylenol and or motrin.I had a feeling that was a high number.I am keeping his diet as it was to get a correct diagnoses when we go in Oct.To be honest he never really complains about pain or anything.He doesnt have diareah(sp) like everyone say's they have and he doesnt have intense pain.The only time he talk's about pain is when he is in school,that is why I thought it was just him wanting out of school.Will he be in any pain fron the biopsy??He has been through so much already and it is just breaking my heart.Can you give me an idea of how long this will take??Hospital stay or anything.We have no funds and I have to try and get help in this area as I will have all my kid's with me and if I need to find food and lodging I need an idea.We are having to go quit a way's away from home so will need to stay there..Can you tell I am nervous

Anyway thanks again for all the help

Jamesmommy

[gf4life]

The biopsy is done by endoscopy and the procedure only takes about two hours total, counting the prep and the recovery time. You shouldn't need to stay overnight. They should sedate him for the procedure, but he will not be totally asleep, only drugged to the point of not really rememberign what is happening and really, really relaxed.

He may have a bit of a sore throat afterwards, but not everybody does have a sore throat, I didn't for either of the tests I had. He will be sleepy afterwards, but should be able to eat and drink normally that day. Which he will want to do once he is fully awake, since they won't allow him to eat anything for at least 8 hours before the procedure. He shouldn't experience any pain except maybe a little gas/bloating since they sometimes inflate the intestines a bit with air to get a better picture of them. A heating pad often helps with this if he complais of a tummyache. I'm glad they have you scheduled so soon, although October probably seems like a long way off to you.

My kids never complained much about stomachaches either, but once they started the gluten free diet they were surprised at how much better they felt. My kids also are off dairy and my oldest has a severe reaction to dairy. After we found out about their being gluten and casein intolerant, my oldest surprised me by say "so that is why I always got a stomachache in the morning after drinking a big glass of milk'! He just never bothered to mention it before. My middle boy has the most health problems and he has never been a complainer. I take him serious when he does complain. He would occasionally get sent home from school due to stomachaches, but for him it was usually that he was having cramping pain and would feel better after having a bowel movement. This has not happened since he has been gluten/dairy free for 6 months.

You and your son might be very surprised to see how he responds to the gluten free diet. You can start it as soon as the biopsy it done, even before you have the results back, just to see how he feels.

God bless,
Mariann

[Jamesmommy]

I just found out tonight one of my Aunt's on my dad's side of the family was diagnosed this past year with this.Guess it could be in the family...

I am worried about him not eating for 8 hours before the biopsy because of his diabetes..He will more than likely drop low.Do you think it is any different for him since he is diabetic??

We go on the 12th and he is to be there at 2:30 so I am thinking this is not the actual biopsy date since we were not given any instructions on him not eating..

I want this done with fast.I wish it could be tomorrow.

Thank you for being such a good listener..I seem at a loss with this,guess I will learn it as I did the diabetes..

Jamesmommy

[gf4life]

I have found that they don't always give you the instructions about the biopsy procedure until they day or two before, at least that has been my experience.

You should call the doctor or the place where the procedure will be done and speak to someone who can answer your questions. The fact that he is diabetic could affect the prep for the test and they might need to treat him differently because of that. But don't wait until right before the test, start calling now with your concerns. And if they don't give you answers that you feel comfortable with, keep asking! This is your son and you need to know that you are doing what is best for him!

Let us know what you find out.
God bless,
Mariann

[lovegrov]

Even in older people who have been sick for years the incidence of non-Hodgkins lymphoma is very, very low. Yes, there's a bigger chance than for the average person but the percentage of people who actually get it is well below 1 percent. And that's in people who don't go gluten-free.

Your son is very, very, very unlikely to get cancer because of celiac.

richard

[Jamesmommy]

Thank you everyone...

I have been such a worry wart and trying to keep all this hidden from him and my mind is just so full right now.

We will be traveling from home so I will call tomorrow and see if they will be testing him on the day we go and what he need's to do since all paperwork and such is done by phone or letter.

I am praying this was all a mistake but I also am trying to prepare myself for yet another life change for him(and US)

Will keep you updated as I get info..Will definately be here for more advice...

Jamesmommy

[CoolCat1]

I understand you worrying about your son. I just had my kids tested too and am waiting for the results. If he does have celiac disease its certainly not that bad and you will feel relieved to know whatever the results are.Cancer is only a remote possiblity for anyone after years of having celiac disease. If you have financial concerns, check to see if you can get a tax break(in Canada there is tax form for celiac disease). Also, so many health food stores carry Gluten Free products. I started baking alot more after I found I had it and my kids like the gluten-free muffins and brownies. Life is not over with celiac disease.

[hthorvald]

Let us know how the test turns out.

H.