Still Undecided...

[Emsstacey]

I have posted several times over the past few years about my history. I had aches/pains and osteopenia at 30 years old. History of chronic mouth sores and ITP (low platelettes), allergies and diarrhea. My doctor tested my vit. d level and did a celiac panel to try to find out the cause of the osteopenia. I had an 18 for the vitamin d and the only thing flagged on the celiac panel was a high deamidated gliadin. It was above 30. He said it wasn't convincing, blah, blah, blah... I tried the diet and didn't feel a lot different and have since gone back and forth.

My grandmother has a lifelong history of stomach problems and extreme osteoporosis that has not always responded to treatment. I had her ask her doctor about celiac and the doctor said that is probably what has caused all of her problems but she is "too old to put her through that diet". *sigh* I also have a great aunt that is confirmed celiac through Mayo clinic.

I have had similar luck with getting further testing. My doctors all blow me off and I know that the Gastro's around here are no help. I don't really have family support to go off, either. I had a scope done at 20 years old looking for "malabsorption" because of stomach issues, ITP and rapid weight loss. I also started taking sublingual B12 and my mouth sores have stopped-- if I miss it-- they come back. It sounds to me that I am not absorbing it any way other than sublingual.

So.... do I keep pestering my docs or do I just decide that once and for all... I need to be Gluten-Free? I feel that my only symptoms are the occ. diarrhea, alternating with constipation and horrible gas. BUT, I'm afraid it's ruining my body on the inside-- ex. the osteopenia at a young age-- and those things I can't feel a change with the diet but they are still being affected. It is such a difficult lifestyle to maintain without sufficient proof but I am tired of doctors here not being any help.

What would you do?

[ravenwoodglass]

Considering this "I had an 18 for the vitamin d and the only thing flagged on the celiac panel was a high deamidated gliadin" if you can't get a doctor to scope you again I would go gluten free and not look back. The deamidated gliadin is the best test they have developed so far and if yours was high it is pretty certain that gluten is an issue for you. Just because you had a negative scope years ago doesn't mean one today would be but some doctors want to see all celiac tests in the positive range before they will scope and some will diagnose based just on positive blood tests because the scope has a high rate of false negatives but the blood tests when positive are positive. It can be frustrating and confusing.

You do need to be strict with the diet and be careful of cross contamination. I hope your feeling better soon.

[Emsstacey]

Thank you! It seems that I have so many of the symptoms but not so many of the immediate symptoms. It's the delayed symptoms that can be so vague that make it so hard to commit. However, I seem to now be possibly developing Meniere's and it makes me wonder if I keep eating gluten-- am I just going to develop autoimmune disease after autoimmune?

Anyways-- I appreciate the encouragement. Evidently, I need to hear this in order to comply!

[ravenwoodglass]

Thank you! It seems that I have so many of the symptoms but not so many of the immediate symptoms. It's the delayed symptoms that can be so vague that make it so hard to commit. However, I seem to now be possibly developing Meniere's and it makes me wonder if I keep eating gluten-- am I just going to develop autoimmune disease after autoimmune?

Anyways-- I appreciate the encouragement. Evidently, I need to hear this in order to comply!

Delayed symptoms are one of the features of intolerances. That is why when doing an elimination diet we are only supposed to add on one thing at a time for a week. Something that may be helpful for you would be keeping a diary of foods and symptoms. It could help you to be able to identify a pattern which may help firm things up as far as the need for strict compliance.

[Jestgar]

I feel that my only symptoms are the occ. diarrhea, alternating with constipation and horrible gas. BUT, I'm afraid it's ruining my body on the inside-- ex. the osteopenia at a young age-- and those things I can't feel a change with the diet but they are still being affected. It is such a difficult lifestyle to maintain without sufficient proof but I am tired of doctors here not being any help.

What would you do?

The risk of continuing to eat gluten when it's actually bad for you, is permanent damage to your body.

The risk of eliminating gluten when it's not harmful to you is......a healthier diet (and a lot of inconvenience).

I would (did) go gluten-free and focus on improving my eating habits. You can always go back to eating mainstream if you ultimately decide it doesn't help, but you can't necessarily repair the damage caused if you decide to wait and see what happens if you keep eating gluten.

It's only food. You are in charge of it.

[nuttmegs17]

I too have a history of autoimmune disease (graves). I went back on gluten so I can be tested and after the first week - didnt feel much difference - this week I have increase swelling (now my lips are effected, I am having hot and cold flashes and I feel really out of it this morning (foggy). I'm at the end of my rope but I want to be sure it is looked at and celiac is either ruled in or ruled out definitly bc if it's not that then it must be something else. I know if it is my problem then this "trial" is actually hurting me....if gluten is responsible for the way I feel this morning then it's going to be tough. I feel crazy. But it will be worth it (??) if it will give me one more piece of the puzzle