What next? Dietician? New GI doc?

[Bobbie73]

So, I had an endoscopy that showed intestinal damage, went off of gluten for two weeks before blood tests because my GI didn’t tell me to keep eating gluten. Tests came back negative. I didn’t want to do a gluten challenge so I had the gene testing done. I’m HLA-DQ8 positive and feeling better gluten free. I sent the results to the GI but he is awful with communication. What do I do next? Should I see a dietician? Do I need to have a good GI for managing my disease? I don’t have a lot of faith in this particular doctor that he’s acting in my best interest. Advice? 

[Fenrir]

Did the biopsy results actually say something about Celiac Disease or more description of the type of damage? There are many things besides Celiac Disease that can cause intestinal damage. 

Assuming it said celiac disease, there's really no further need to see Drs. if you are feeling better gluten-free. As long as you've had labs on vitamins, minerals...ect that is. 

[RMJ]

Which blood tests did you have?  Not everyone is positive on all of them.

[Bobbie73]

10 minutes ago, RKBrumbelow said:

I have never really understood the necessity of a formal Celiac diagnosis. Is it important to know if you simply have gluten intolerance vs Celiac? Yes very different conditions. One is an allergic reaction, the other is an autoimmune disorder. Is it important to differentiate between fodmap and celiac, certainty. 
 

In my personal case, I thought I might have Chrone’s  Disease and so I started eliminating things from my diet. The easiest one to eliminate, in my case was Gluten. Well turns out I responded very favorably to a gluten free diet and since I was already on a very low carb (20g of carbs or less), high protein (180+g of protein) diet, I simply stayed with it and eliminated wheat from it as best I could.

It should be noted that I am in the hospital, and have been for over a month because of my last gluten exposure, it is quite profound and I have multiple autoimmune conditions. But this most recent time I have lost the ability to walk, have severe muscle wastage, even control my ability to eliminate waste. So Celiac hits me harder than most. There is almost nothing someone could say to deliberately expose myself to gluten knowing that the damage is progressive. A formal diagnosis would require exposure, thus more damage. Maybe if there were a cure, or if there were a treatment for symptoms that required a prescription, maybe. But, there is no cure, there are no prescriptions and again, I would like to be able to sit up, perhaps even walk again, so formal diagnosis? No Thanks.

 

It is probably worth noting that I worked in a medical research field, my background is physical and biochemistry, and even taking 50mg of prednisone a day symptoms like 3 inches of class 4 pitting edema, seriously elevated cardiac and liver enzymes, plus psoriasis, vasculitis, and spinal stenosis symptoms show up when exposed to gluten 

 

 

Thank you for sharing your experience with me. I hope you find yourself out of the hospital soon.   My GI told me I would know from the endoscopy, gene test and response to the gluten-free diet but he has yet to contact me. He is notorious for leaving his patients hanging with unanswered questions but he was my doctors referral. I’m just wondering if there’s more I need to do in follow up care. Should my iron levels be checked? I’m anemic. Should I have a follow up endoscopy in a year to see if I’m healing? Do I see a dietitian? Those are the kind of questions I have. I guess I just feel a little lost. 

[Scott Adams]

Many people need a formal diagnosis to help justify the difficulty of staying on a 100% gluten-free diet for life. Also, they will be able to more easily get follow up care such as blood tests and biopsies. However, for many who can stay gluten-free without the piece of paper that says "celiac disease," there are other considerations, for example private health and life insurance policies will likely be more expensive and harder to get, which can affect many people for the rest of their lives.

Each person needs to decide how the want to handle this based on their own situation.

[Fenrir]

The only major downside to not getting a DX is that it might be something other than Celiac Disease. However, if you go gluten-free and your symptoms go away eventually then you can be fairly certain. 

With that said if you a biopsy saying you celiac disease then you arleady have the DX.