ravenwoodglass

Take your doctors advice. If she did blood work that suggested you have a gluten issue you likely had positive celiac blood tests. Celiac can effect the nervous system, as well as many others, not just the GI tract. Your issues may resolve on a strictly followed gluten-free diet but you need to keep eating gluten until after you have seen the GI doctor and been tested. Welcome to the board and do read the Newbie 101 thread at the top of the Coping section. With positive blood work you will need the diet no matter what the results of the endoscopy.

Have they done a celiac panel on you? Also with the MRI were there any white spots that the neuro considered 'normal'? I ask that because your symptoms are much like mine before diagnosis and I had white spots on the MRI suggestive of MS but after a spinal tap ruled out MS my neurologist said they were normal 'lots of folks have them'. He didn't know they were diagnostic of gluten ataxia. I would suffer for a few more years before I was finally diagnosed celiac. If the doctors have done all testing for celiac then IMHO you should try the diet strictly for at least 6 months. In addition have they done testing for your B12 levels? If they have what were the results? They should be over 500. If you have had more than one test for B12 check the results and see if the levels have been dropping. Your body can stop being able to utilize B12 before the levels drop below normal levels. A sublingual B12 may be helpful with the tingling sensation and it is a water soluable vitamin so don't be disturbed by the high levels in the vitamin tablets as your body will excrete any excess. I hope you get some relief soon. Do read the Newbie 101 thread at the top of the Coping section as it will have a lot of good info on what you need to do to be as strict as possible. Do make sure that your doctors have finished all celiac related testing before starting the diet as being gluten free will cause a false negative on celiac testing. The gluten free diet will not impact testing for other disorders.

It sounds like the diet is helping him and it won't interfer with any testing for other problems that may be going on. I am a bit late to this but want to address the negative gene test. Despite those two genes not being present he could still be celiac. There are other genes associated although they are more rare. I am an example of a firmly diagnosed celiac who is not positive for either of those genes. I have a double copy of DQ9. I hope he continues to improve and that celiac or gluten intolerance are his only issues. You need to be just as strict with both. Children can heal quickly and I hope he is doing well soon.

Try and stick with as much whole unprocessed food as you can for now. Veggies, fruits, potatoes, rice, meats and fish etc will help to aid healing. After you are feeling better for a bit than go add in gluten free treats and convience foods. If you haven't been much of a cook before ask and look at the recipe section for ideas. Best to avoid or limit dairy until you have healed and personally I would also avoid soy as those two items are common intolerances for many of us. Add them in when you have been feeing better to make sure you are tolerating. I hope you are feeling better soon but don't get discouraged if you have some ups and downs. Be sure you have checked the Newbie 101 thread as it has a lot of good advice to help keep you safe.

I wasn't getting the box to reply. The problem seems to have been resolved as no issues today.

I also use McCormicks for single ingredient and Wegmans brand for mixed as long as the container has the circleG. They make a great garlic and herb mixed that I use almost daily.

Seems we have done another 'upgrade' to the board. Anyone else having problems replying to posts?

You would not need to be back on gluten for that test as it is to see if the diet is helping bring the antibodies down. That combined with resolution of symptoms is diagnostic and some doctors will give a diagnosis based on the results despite a negative biopsy.

No an allergy would not cause those antibodies to be high. The small intestine is very big and damage can be easily missed. Do get on the diet strictly and then in 6 months or so get your antibodies retested. They will likely have come down and your symptoms improved.

PT physical therapist OT occupational therapist

Please don't rely on gene testing to know for sure whether you could be celiac. There are more than just the two most common genes tested for that are associated with celiac. If you happen to have one of the more rare genes you could do a lot of damage if you are celiac and you and your doctor dismiss the possibility. You have to be on a regular gluten diet for testing so if you have been gluten free you will need to do a challenge. As for confirmation that gluten is not something your body wants it seems your body is already giving you the answer. It also sounds like you need a diagnosis for confirmation and to keep yourself strict so a challenge may be your only option. You need a good 6 weeks with eating gluten at a level of a couple slices of bread a day for blood work.

If you are taking that much you are overdosing yourself. Did your doctor tell you to take it at that level? If not stop and just take the recommended dosage. Overdosing can cause liver damage and even strokes. https://www.livestrong.com/article/101814-symptoms-niacinamide-overdose/ https://www.healthline.com/health/food-nutrition/niacin-overdose#if-you-suspect-an-overdose

If you take her gluten free that will cause a false negative with testing. See if you can get your GP to order a complete panel today. When you call ask to speak to a nurse. They can relay info to the doctor between patients. Also ask for an appointment or a call back with the doctor. Some doctors will give an official diagnosis based on decrease in anti-bodies and resolution of symptoms. With the serious nature of the symptoms the GP may be comfortable with diagnosing without the endo. It is important to have a diagnosis for young people as precautions need to be taken in school. It can also help a young person stay compliant with the diet.

Good luck at the clinic. I hope they are able to help.

So Sorry you are having to deal with this problem. I know it is an embrassing problem to discuss with your doctor but have you talked with the doc about it? Some women find it easier to talk to their OB/GYN than their GP. There are physical therapists that specialize in this type of issue and can help resolve this and your doctor can refer you to one. You may be having neuro impact that is contributing to this so you REALLY need to be doing all you can to stay safe and prevent cross contamination. It is not easy but it is crucial. Do read the Newbie 101 thread at the top of the Coping section and ask any questions needed. You're not alone in struggling with the diet and celiac's many impacts. I hope this resolves for you soon.