Hoping This Is The Answer For Us.

[Ali7]

Hi everyone, i am new here and have enjoyed reading many posts before deciding to join in.

Both my daughter (12 ) and I are having a few problems.

My daughter started having abdominal pains last September, we put it down to the beginning of a menstrual cycle but it was appearing at other times, in October she went to bed with pain and woke about 11pm in agony and vomiting so then i thought all the other pain was a lead up to this (maybe a virus). The pain and vomiting lasted all night but as the vomiting ended the pain worsened so then i thought the vomiting was a symptom of the pain, when she started screaming i rang an ambulance and she was in hospital for 4 days with pain, lots of tests showed there was nothing physically wrong with her.

While staying in the hospital i bacame violently ill with chronic diarhea and vomiting and abdominal pain and was admitted to emergency for 2 days, blood and stool tests showed it was not viral, bacterial or food poisoning??

We had many more visits to the hospital and our Holistic Dr who ordered stool tests for us both was looking for some answers, the test results came back very similar with neither of us digesting starches or fats, we have been put on 6 weeks of gluten and dairy free, unfortunately our Dr is moving overseas in this time but she has said she thinks we are allergic to gluten and if we feel wonderful after 6 weeks we can decide if we just want to accept it or go back to gluten so we can do further tests.

Here is the other thing, I have had trouble with my digestion as long as i can remember and always thought it was sugar or wheat , eliminated them from my diet and felt great but then let them creep back in, I have pain in my shoulders, am being treated for Vit D and Iron Deficiency and often find myself on the toilet at 3am (which can also have nausea and pain involved)

We have never been able to say we just ate bread now we have pain, there seems no direct link.

My daughter is being tested for gluten allergy through blood tests after a second visit to emergency (when she said the pain had changed to burning and was unbearable) I was worried something had ruptured and her pain has never been fake.

Anyway, I would love to hear if anyone has had any similar symptoms, we are only on day 3 and i prey for the day when my daughter says she felt zero pain (it is always there to some degree).

Thanks for listening!

[mushroom]

Do you have a GP who could order the celiac panel of blood tests for you both right away. That way you may find out now if gluten is a problem for you and not have to go back to do a challenge (which could well make you even more ill than you both have been). If you do it right away a few days off gluten will not make much difference. Longer than a week and you are starting to perhaps affect the results of the tests because the antibodies start disappearing from the blood stream. The celiac panel should have these tests:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

These are the screening tests recognoized by alleopathic medicine as being diagnostic of potential celiac disease. They then usually like to confirm the diagnosis with an endoscopy with biopsy. You do not have to be positive on all tests, but it is important to run them all as you can be positive on some and negative on others. The total serum IgA MUST be run, because it is the validator of the other results. Now it is perhaps these tests that your daughter is having done, rather than the 'allergy' tests you describe, because the two are often confused. I would strongly advise you both have them done before undertaking a gluten free diet. Your symptoms do sound suggestive of gluten problems, particularly the nondigesting foods and the nutrient deficiencies.

Welcome to the boards and let us know how else we can help you.

[Ali7]

Thanks Neroli,

We will wait for the blood test first from the hospital, I am actually happy to be Gluten free and if I feel good after 6 weeks and my iron levels are better, i will stay that way, I just would like some answers about my daughter as her undiagnosed pain was so terrible (and heartbreaking to watch her in so much pain) Fingers crossed we get the answers and can just get on with life.

[mushroom]

I would personally feel a lot better if I knew for sure that they had drawn a celiac blood panel on your daughter. Is there any way you can find out? Because if it is in fact allergy testing it will not tell you anything about celiac It is not so important for you to have a diagnosis, but for her in an educational environment she will most likely need that diagnosis in order to have special accommodations made for her in school to avoid gluten, not only in the cafeteria, but if she goes to college on a college meal plan; if she wants to join the military it is important also. And you do not want to have to put her back on gluten again. Is there some way you can find out from the hospital lab what they are running?

[Ali7]

I will give them a ring in the morning and see if I can find out, they have taken lots of blood and stools for tests and they said Gluten was one of them.

[mommida]

Now that you have been gluten free your Celiac panel may not be accurate.

Keep a food journal. (by journal I mean everything gets written down about food, activities, and BMs/symptoms)