How Long Before Testing Should I Restart Gluten

[StacyLynch]

We are waiting for approval to a allergist. My son has daily seizures, and he had a 3 day cluster this week. They were so bad he almost had to be admitted. We have recent labs below. It might not be celiac but maybe gluten sensitive or another food allergy. Its be 20 years of seizures.  I know he needs to eat gluten for the testing but he has not had  a seizure in 2 days and this is rare. I don't want to restart gluten right now. It could take weeks to get the testing approved. If he keeps doing well like now i'm hoping that will also give the dr. a reason to test him more. How long before testing for celiac for food intolerance should I start gluten again? Below is the diagnosis from blood work for a primary care.

Diagnosis
1) 345.9 Seizure
2) 279.9 Immune Mechanism Unspecified Disorders
3) 579.8 Food Intolerances
4) 279.01 IgA  Selective Deficiency
5) 277.9 Neurotransmitter Disorder

[nvsmom]

You don't need an allergist to test for celiac disease. Celiac is not an allergy but an autoimmune disease.  Any GP should be able to run the tests for you on Monday so you can start a gluten-free trial soon (once testing is done).

 

These are all of the celiac disease tests available:

• tTG IGA and tTG IgG (tissue transglutaminase) - the most common tests done
• DGP IgA and DGP IgG (deaminated gliadin peptides) - good test for detecting early celiac disease
• EMA IgA or IgG (endomysial antibodies) - similar to the tTG tests but detects more advanced disease
• AGA IGA and AGA IgG (anti-gliadin antibodies) - older and less reliable tests largely replaced by the DGP tests
• endoscopic biopsy - 6+ samples taken

Blood tests usually include a total serum IgA to check if the patient is IgA deficient, like your son.  1 in 20 celiacs is IgA deficient (compared to about 1 in 700 in the regular population), and this affect all IgA based tests (DGP IgA, tTG IgA, EMA IgA, AGA IgA) and cause false negatives even if he is a celiac.  Your son will have to rely solely on the IgG based tests (tTG IgG, DGP IgG, etc), or the biopsy, for a diagnosis of celiac disease.

 

... The fact that he is low in IgA slightly indicates that it could be celiac disease (because it is common among celiacs) but it is in no way diagnostic.

 

See a GP and get the IgG based tests run, skip the others, and do it soon.  If he is gluten-free for long, he will have to complete a gluten challenge of 1-2 slices of bread per day, or the equivalent, for 2 to 3 months before he can attempt accurate testing.  Don't go gluten-free now or you will be making him consume gluten for more time in the long run.

 

Since his seizures may be related to celiac disease, hopefully a doctor will hurry him in and get the testing done more quickly.

 

Best wishes to you both.

[nvsmom]

This report (pages 8-12) has good information on testing: Open Original Shared Link

 

It's a good one to take to the doctor.

[StacyLynch]

I am so confused. He already had the labs below done, and we have the results

 

IgG with 4  subclasses 1,2,3 & 4          Cpt code: 82784, 82787 x 4                            L  Corp :  IgA with 2 subclasses                           82784, 82787 x2                                                                  IgG w/subs: 209601 IgD                                                           82784          IgA w/subs: 823270 IgM                                                           82784         IgD: 002162 Dx codes 279.3 IgM: 001792

Unspecified immunity deficiency 

 

Then from the results the dr. said in his diagnosis (below)

 

2) 279.9 Immune Mechanism Unspecified Disorders
3) 579.8 Food Intolerances
4) 279.01 IgA  Selective Deficiency   

 

So that test above with diagnosis is only a indicator to test for celiac disease right? I am seriously only 2-3 days into researching this.                                                                         

[cyclinglady]

He did NOT get tested for celiac disease.

[StacyLynch]

He did NOT get tested for celiac disease.

Thank you for the info. We actually see his neurologist on Tuesday, way before an allergist approval will be done. I am going to bring her the lab results from the primary care showing the diagnosis below.

2) 279.9 Immune Mechanism Unspecified Disorders

3) 579.8 Food Intolerances

4) 279.01 IgA  Selective Deficiency   

 

 

Then I will ask to be tested for celiac disease. 20 years of uncontrolled seizures I hope she authorizes this. 

[cyclinglady]

I think the diagnosis means that he MIGHT have issues with food intolerances (like dairy,etc.). He might have something wrong with his immune system, but that does not necessarily mean that he has an autoimmune disorder, like celiac disease.

Research celiac disease. There is a link between celiac disease and epilepsy. Celiac disease has 300 possible symptoms. It can affect three areas of the body:

1. Skin

2. Intestinal Tract/Malabsorption issues affecting joints, vitamin defciencies, etc.

3. Brain or Nervous System

Please keep researching celiac disease. Since you are going to see your allergist, he can order the complete celiac panel (not sure how your insurance works). Or you can go to your GP/PCP for testing.

I think finding research in how celiac disease can cause epilepsy is your best means of getting tested.

[ravenwoodglass]

Have him keep eating gluten until you get the celiac panel done. I can appretiate that you have seen a couple seizure free days and are reluctant to start him back on gluten but if the seizures are related to celiac he may have a severe reaction when you add gluten in again if he has been gluten free for very long.

Has he had a brain MRI recently? Celiac that attacks the brain can cause something called UBOs or unidentified bright objects. They show up as bright white spots on an MRI. Not all neurologists are aware of this. Mine wasn't so it delayed my diagnosis for a couple of years. I don't have a link but a search should bring up some info.

[cyclinglady]

Reports like this from a reputable site might build your case in requesting celiac testing.

Open Original Shared Link

Open Original Shared Link

[StacyLynch]

Yes, there are many children who have finally been seizure free after going gluten free, even being negative for celiac.  Do you know if a neurologist can order a celiac panel?  Do you know if being off gluten for only 5 days would alter the test?  Yes, he has had many MRI's I never thought to ask about Celiac.

[cyclinglady]

Any medical doctor can order the celiac blood panel. Make sure the complete panel is ordered. They often just order a shorter version to save on costs. If I had not had the complete panel, I never would have received a diagnosis. Not sure how your insurance handles it though. They may want a GI to order it.

Five days of being gluten free should not affect testing. Just get him back in gluten.

If celiac disease is ruled out, then I would strongly suggest going gluten free for up to six months. This forum can help guide you through he gluten free process. It is not just about making sure gluten in not in his food (cross contamination, hidden gluten , etc.)

[StacyLynch]

I actually printed out the two links you sent me (BELOW)  last night. We have been lucky that the Drs. have always approved my lab requests even thought we have never had a answer. They have always seen my frustration.  I have 6 children and their l lives are altered so much due to this refractory epilepsy. They are trooper t hough.

Open Original Shared Link

Open Original Shared Link

[cyclinglady]

Hang in there, Mom! It is great that you are such a good advocate for your son and other children!