Doctor Questioning My Diagnosis Of Celiac

[Mrs. M.]

In February of this year I was "diagnosed" with Celiac disease based on a positive ttG IgG. My doctor said this result was enough to make her convinced I had celiac disease and she said I should start on a gluten-free diet, which I did. I have been following a gluten-free diet for the past 8 months, and have not intentionally eaten any gluten, although I suspect that some has snuck in here and there when I am not aware. My symptoms were never extreme. The reason I was initially tested was that I was having inflammation of muscles in my leg, and my chiropractor recommended that I be tested. I do have stomach issues (have lived with these for years) and migraines, and various other stuff that can all be part of celiac. But nothing delibilitating. Of course, now that I am aware of celiac disease, I have been reading gluten-free cookbooks and other sources and feel like living a gluten-free life is the right path for me. I also know that many people with celiac disease don't tolerate dairy or other types of foods.

Recently I asked my doctor for a referral to a nutritionist to see whether I could improve my diet further and find out whether other foods were causing me to have stomach cramping, bloating, etc. She surprised me by saying "you should have an endoscopy to find out whether you have celiac disease". This is a huge surprise to me, since I've been going under the assumption that I DO have celiac, since this is what she told me 8 months ago.

I have requested a consultation with a GI doc to review my history before I undergo an invasive and possibly unnecessary procedure. I would love to have feedback from this group on any questions I should be asking. I have some already:

-In order for the endoscopy to be meaningful, wouldn't I have to start eating gluten again? for how long?

-Is it normal for someone with celiac to still experience some GI discomfort like bloating, cramping, even when on a gluten-free diet? (I have no idea what a "normal" stomach feels like)

-How do people figure out whether they have intolerance to dairy/corn/other foods besides gluten?

-Should I have more blood screening? What about genetic testing?

(I am also concerned about my kids, who are 5 and 8 years old, especially the 8-year old, who had chronic stomach aches and a rash on her elbows and knees until she stopped eating gluten.)

Basically, I feel like I have so much evidence that I have celiac disease, but I don't know whether I am just looking for pieces to fall into place. Any advice/comments welcome!!!

[Lisa]

In February of this year I was "diagnosed" with Celiac disease based on a positive ttG IgG. My doctor said this result was enough to make her convinced I had celiac disease and she said I should start on a gluten-free diet, which I did. I have been following a gluten-free diet for the past 8 months, and have not intentionally eaten any gluten, although I suspect that some has snuck in here and there when I am not aware. My symptoms were never extreme. The reason I was initially tested was that I was having inflammation of muscles in my leg, and my chiropractor recommended that I be tested. I do have stomach issues (have lived with these for years) and migraines, and various other stuff that can all be part of celiac. But nothing delibilitating. Of course, now that I am aware of celiac disease, I have been reading gluten-free cookbooks and other sources and feel like living a gluten-free life is the right path for me. I also know that many people with celiac disease don't tolerate dairy or other types of foods.

Recently I asked my doctor for a referral to a nutritionist to see whether I could improve my diet further and find out whether other foods were causing me to have stomach cramping, bloating, etc. She surprised me by saying "you should have an endoscopy to find out whether you have celiac disease". This is a huge surprise to me, since I've been going under the assumption that I DO have celiac, since this is what she told me 8 months ago.

I have requested a consultation with a GI doc to review my history before I undergo an invasive and possibly unnecessary procedure. I would love to have feedback from this group on any questions I should be asking. I have some already:

-In order for the endoscopy to be meaningful, wouldn't I have to start eating gluten again? for how long?

-Is it normal for someone with celiac to still experience some GI discomfort like bloating, cramping, even when on a gluten-free diet? (I have no idea what a "normal" stomach feels like)

-How do people figure out whether they have intolerance to dairy/corn/other foods besides gluten?

-Should I have more blood screening? What about genetic testing?

(I am also concerned about my kids, who are 5 and 8 years old, especially the 8-year old, who had chronic stomach aches and a rash on her elbows and knees until she stopped eating gluten.)

Basically, I feel like I have so much evidence that I have celiac disease, but I don't know whether I am just looking for pieces to fall into place. Any advice/comments welcome!!!

As with you, I see no reason to reintroduce gluten for the satisfaction of your doctors for further diagnosis, after you have been gluten free for eight months. It sounds a bit counter productive to me, with no assurance for accuracy.

You have had a positive dietary response, a reaction to gluten and dairy can also be an issues (it can be temporary or otherwise). Combined with positive blood work - you're part of the club, imho.

It also appears that you have a strong family history. As you mentioned, you children appear to be symptomatic. I would recommend that you have your children's break out tested at the time for DH - dermatitis herpitaformus. It too can confirm an intolerance to gluten, with a skin manifestation. A diagnose with children is important because it helps deal with the school system to meet their needs.

Sounds like you're on top of things. So go forth and educate your doctors.

[Newbee]

For some people, being gluten free is not enough. Unfortunately I am one of those people and have needed to eliminate grains and a lot of other foods to feel better. I've been following the specific carbohydrate diet (SCD) which helped me start an elimination diet which helped me figure out what other foods are bothering me. I would recommend trying this if being gluten free is not resolving issues for you.

As you tested positive all your first degree relatives should be tested for celiac. It is very common for siblings, parents, and children to have the disease even if they don't think they have any symptoms. My brother thought he was fine but he was diagnosed in the early stages of the disease. This is when you want to catch celiac disease. By the time you are showing symptoms or it has gone undiagnosed for years this is when you have trouble healing.

Good luck.

[Skysmom03]

I would have the endoscopy done. I am a fi believer that the doctors need to do it for a reason! Ditto on first degree relatives. My husband and son both have it. My son had absolutely no symptoms and doesn't "look" Celiac at all. And we only checked it because my husband almost died from his. He (my son)has had it for three years doctor believes--> silent celiac sprue

[GottaSki]

I often recommend getting the endoscopy for not only diagnosis, but additionally for follow up care.

In this case I see no advantage to introducing gluten for a challenge - you are already living gluten-free and improving your health. You had positive blood test that led to your diagnosis - no reason to dismiss the diagnosis because you have not yet recovered fully. It can take many months and even years to heal the damage that was caused by undiagnosed Celiac Disease. To consume gluten for 6 or more weeks with no guarantee that it will result in the positive biopsy this doctor is now interested in obtaining doesn't seem to benefit you.

If your doctor is interested in an endoscopy to check for the current status of your digestive system without a gluten challenge, that may be of benefit to you.

Gene testing may add another piece to the puzzle and I would opt for that before a gluten challenge. It is not definitive, but the information can be helpful.

IMO - with ongoing digestive symptoms after eight months gluten-free - it is time to look at other intolerances that may be impeding healing.

Elimination is the only way to determine other food intolerance. There are two ways to accomplish this. Remove one food or food group at a time to monitor for improvement OR remove all suspect foods and then trial them individually to monitor reactions. With either approach a detailed food/symptom log is essential.

I think I addressed most of your questions...oh more blood tests. Follow up full celiac panel along with nutrient testing would be a good idea for two reasons. The first being to compare with your original celiac panel - the second being to find any outstanding nutritional deficiencies that may need supplementation.

Good luck to you

[Mrs. M.]

Thank you all very much for your responses to my questions. It is helpful to know that I am not way off track here. I will hope for a useful conversation tomorrow with the GI doc.

[mushroom]

Thank you all very much for your responses to my questions. It is helpful to know that I am not way off track here. I will hope for a useful conversation tomorrow with the GI doc.

Don't be surprised if he doesn't know anything about other food intolerances (dairy might be the exception) -- most of them don't think that food has much to do with anything except starvation and obesity

[GottaSki]

Don't be surprised if he doesn't know anything about other food intolerances (dairy might be the exception) -- most of them don't think that food has much to do with anything except starvation and obesity

Sad, but true.

[Takala]

From all the posts that I have read on this site and elsewhere, it is not unusual for doctors to recommend a biopsy when the patient has not been "fully" diagnosed, but still has been off of enough gluten for a long enough time, and doesn't resume eating it for a long enough time to redamage themselves thoroughly, that the biopsy then is negative. Then the doctor announces that the patient is not really celiac, after all, and mass confusion ensues.

Sometimes, people also won't feel all the way better, and they go back to the doctor(s) who are all too happy to recommend that the patient get a biopsy ($$$) and they then have the perfect excuse to resume eating gluten, which doesn't make them feel any better, but they then go on this wild goose chase that has then trying to blame all sorts of other foods or diseases for how they feel, when it was the gluten, the entire time.

What a bummer that this doctor is recommending this sequence of events. The time to get a biopsy is when you first had symptoms and the positive blood test. If you had a positive blood test before, were told you're celiac, and are responding to the gluten free diet, don't let them "undiagnose" you. They can run the blood tests again to see if your antibody levels to gluten are dropping. You can also do an elimination diet and keep a food diary to track how and what foods you react to. Some of us had to go on a more simple diet at first to get the reactions down, and then more slowly experiment with what gluten free foods could be tolerated. You may find success in doing a Specific Carbohydrate Diet, or a Paleo- type diet, which don't use grains. At first, I had to do a modified SCD, because I could not even put up with yogurt very well, but I eventually got some forms of dairy back, once I winnowed out manufactured processed foods that were giving me real problems. Some of us also react poorly to gluten free oats or flours processed in the same facility as them. Others can't do soy. Corn problems can be tested by taking all forms of corn out, then eating some fresh corn on the cob which you shucked and cooked yourself, and seeing how you react, which solves the cross contamination problem.