Need Advice

[Emily Elizabeth]

I have my 6 week follow up appointment since I was diagnosed next Tuesday the 26th and I am very nervous. The doctor told me that I would have to have another endoscopy if I was not doing better. Now I am definitely feeling better, but I am still having intestinal problems (loose stools at least 4 times a day) but it is better then it was before. I don't have the fogginess or extreme hunger and fatigue or the pregnant belly. I also have noticed that I get more sick when I am glutened (or suspect that I am) so that seems to tell me that I'm not ingesting it everyday (I wake up in the middle of the night and have to urgently go to the bathroom 2-3 times).

What advice do you all have? If they suggest an endoscopy should I do it? Also, they never tested me for vitamin deficiencies. Should I ask that they do that?

I assume that it is definite that I have celiac disease right (wishful thinking)? I guess they are just going to check to see if I may have something else in addition to it?

Here are my test results (not really sure what this means):

AGA IgG - 11.9 U/ml

AGA IgA - 5.9 U/ml

IgA ELISA (TTG IgA) - >100 U/ml

IgA IFA (EMA IgA) - Positive

Total IgA - 100 mg/dl

HLA DQ2 - Detected

HLA DQ8 - Not Detected

Biopsy - Inconclusive evidence of Celiac Disease (they did this first, then ran the blood test, they said that it was microscopic evidence)

Thanks for any help/advice you can give!

[emorgan816]

Emily,

I found that my regular doctor did not prescribe any supplements for me. It was go gluten-free and come back in 6-8 weeks. Well, I took matters into my own hands and went to a holistic doctor that specializes in allergies and he put me on probiotics, digestive enzymes, Vitamins and a powder drink - all to help boost my immune system and help my digestive tract heal. What a HUGE difference this made. I would talk to someone about getting you on some sort of regiment of vitamins and/or supplements to help you out. I have also found out that I need to cut out dairy (this disease really bites!) I had an episode after eating some ice-cream (yes, it was gluten-free - I checked with the manufacturer) so now no dairy.

Good luck with your follow up! If you feel that you need to have another endoscopy I would do that. You know your own body. If you are feeling better maybe tell him that, ask about supplements to aid you in your digestion and the healing process in your instestines and then schedule another appointment for another 6 weeks. If at that time you are not better than I would do the endoscopy. There could be something else going on.

You really are the best judge of your body and your symptoms.

Good luck to you!

Elizabeth

[Emily Elizabeth]

Thanks Elizabeth. I wish that I had a referral for a holistic doctor. I even asked my doctor to recommend a nutritionist and she said she didn't really have anyone that she would recommend. Ugh. I really need to do research and probably join a support group so I can learn more. One step at a time though right? Thanks again for your advice.

  emorgan816 said:

Emily,

I found that my regular doctor did not prescribe any supplements for me. It was go gluten-free and come back in 6-8 weeks. Well, I took matters into my own hands and went to a holistic doctor that specializes in allergies and he put me on probiotics, digestive enzymes, Vitamins and a powder drink - all to help boost my immune system and help my digestive tract heal. What a HUGE difference this made. I would talk to someone about getting you on some sort of regiment of vitamins and/or supplements to help you out. I have also found out that I need to cut out dairy (this disease really bites!) I had an episode after eating some ice-cream (yes, it was gluten-free - I checked with the manufacturer) so now no dairy.

Good luck with your follow up! If you feel that you need to have another endoscopy I would do that. You know your own body. If you are feeling better maybe tell him that, ask about supplements to aid you in your digestion and the healing process in your instestines and then schedule another appointment for another 6 weeks. If at that time you are not better than I would do the endoscopy. There could be something else going on.

You really are the best judge of your body and your symptoms.

Good luck to you!

Elizabeth

[Fiddle-Faddle]

Looks like good advice from Elizabeth.

I'm also wondering if perhaps you are also sensitive to dairy products? Some celiacs react to casein, some to lactose; others only need to eliminate dairy until their gut heals from the gluten damage (which takes a few months).

If you check out Ursa Major on this board, she went through quite a hunt to figure out the many foods to which she was intolerant. She did so much research on food intolerances--she is very knowledgeable.

You might also check out Rachel_24, who has a whole thread devoted to other difficulties that can cause gluten intolerance. These include Lyme disease and mercury toxicity (from dental amalgams and vaccines). There are many people on that thread who have been diagnosed with one or both in addition to gluten problems.

Unfortunately, there are lots of possibilities--and most doctors simply aren't aware of them.

Good luck!

[Emily Elizabeth]

Thanks for your advice. My doctor is going to do the breath test for lactose intolerance. I am also getting tested for parasites. Thanks for the advice on looking up Ursa Major and Rachel_24. I'll see what I can learn from their posts. I can't wait until I'm done wondering. I just want to move forward with my life.

  Fiddle-Faddle said:

Looks like good advice from Elizabeth.

I'm also wondering if perhaps you are also sensitive to dairy products? Some celiacs react to casein, some to lactose; others only need to eliminate dairy until their gut heals from the gluten damage (which takes a few months).

If you check out Ursa Major on this board, she went through quite a hunt to figure out the many foods to which she was intolerant. She did so much research on food intolerances--she is very knowledgeable.

You might also check out Rachel_24, who has a whole thread devoted to other difficulties that can cause gluten intolerance. These include Lyme disease and mercury toxicity (from dental amalgams and vaccines). There are many people on that thread who have been diagnosed with one or both in addition to gluten problems.

Unfortunately, there are lots of possibilities--and most doctors simply aren't aware of them.

Good luck!