Is My Doctor Overzealous In Diagnosing Me With Celiacs?

[atyose]

Hello:

I am lost and am hoping for some guidance. One year ago I had bloodwork and it showed I had anemia. My doctor left her practice and I received a phone call from a nurse I did not know stating to go have a colonoscopy done to see if I had internal bleeding. I had a $5000 health insurance deductible so I did not have it done at the time.

I took iron pills and my iron levels returned to normal. Even after I stopped the iron pills my iron levels remained normal.

I found a new doctor one year after the anemia was diagnosed and she suggested I have a colonoscopy due to the following symptoms:

Unexplained anemia even though my iron levels were normal even without taking iron pills

Constipation and stomach pain for 6 months

Extreme exhaustion- so tired I nap for 3 to 4 hours a day and sleep 9 to 10 hours at night

Depression and Anxiety- for no reason, life is going great.

I now had insurance so I went to the gastroenterologist nurse and I felt pain upon my stomach being touched. She suggested I also have an endoscopy. I had a biopsy of the small intestine done which showed an increase in lymphocytes. I then had bloodwork done. It showed I had the celiac gene, but the antibodies were negative.

My gastroenterologist feels I have Celiacs disease due to the anemia one year ago, the increased lymphocytes and the Celiac gene. She feels it's at the very beginning stage and wants me to go on a 100% gluten free diet.

I am torn. I wish the antibodies were positive so I could feel more certain of the diagnosis. I don't want to go on a gluten free diet if it's unnecessary, but I also don't want to risk my health. Does anyone have any guidance for me?

Thank you for any responses!

Carol

[Roda]

Sounds like you have a good GI doctor. I would definately follow her advice. So many on here would love to have a doctor like that. Good luck.

[hnybny91]

Count your blessings honey. Many of us went through YEARS of unneccessary tests to never get a diagnosis. Try the gluten free diet and see if it helps and then you will have your answer.

[Jestgar]

Try the gluten free diet and see if it helps and then you will have your answer.

This is the best test.

[tarnalberry]

Yup - try the diet and see how you feel.

[GlutenFreeManna]

The biopsy is supposedly the "gold standard" for diagnosing in the medical world if done right. The blood tests are slightly less reliable--about 20% false negative rate in people that are actually celiac. If you have a positive biopsy, the most common celiac genes AND you respond to the diet you very likely have celiac (actually many here were diagnosed with less so those three are VERY indicative of celiac). Your docotr is great to advise you to go gluten free. So many people come to these boards and post that they had a positive test several years ago but were never told to go gluten free OR they ignored the advice to go gluten free and now their health is worse than it was when they had the first tests. If you try the diet 100% and your health does not improve then you can always go back and be tested for other things. But if you have celiac and you do not go gluten free you are risking developing worse health problems than what you have now. In short, you have nothing to lose (except for that stomach pain, constipation and depression/anxiety) by trying the diet now.

ETA: Welcome to the gluten free world.

[eatmeat4good]

IF Celiac is what it is, you will feel better and there won't be years of damage that could have been prevented.

Going gluten free should cause you to feel a big difference in the anxiety and depression for no reason. Many of us have had that symtom and it was ignored, medicated, or we were told to go to therapy.

Because your Dr. is very astute, you have the information you need to take good care of yourself and the symptoms of depression, anxiety and fatigue can go away once you are on the diet, if this is indeed your problem. I am sitting here shocked and apalled and happy for you that your Dr. was knowledgeable enough to put all those pieces together. It gives me great hope that Dr.'s are beginning to recognize those symptoms. You are one very lucky person to be given the diagnosis early enough before it destroys your body and your life.

Once gluten is out of your system, many people become more sensitive to gluten, and the reaction of the body on re-introducing it is sometimes the real deciding factor, whether one has a diagnosis or not. That kind of sensitivity doesn't happen to people who are not Celiac or Gluten Intolerant. (unless it is silent Celiac) So you should know from your bodies response if this is helpful to you or not. It may take some months to heal, but the fact that you don't have antibodies is wonderful since the damage isn't as far as it could have progressed.

What have you got to lose? Gluten foods, depression, anxiety, fatigue and lymphocytes. Plus all the other symtoms you described. If it doesn't work, you can always go back to eating gluten foods, but if you don't try it you will never know.

I'm jealous that you ran into a Dr. who knows about Celiac, and the 25 I went to, consulted and paid, in the last 7 years did not.

But I'm hoping you have your answer and that things get better quickly.

An ounce of prevention is worth a pound of cure.

[zus888]

I was SO in your shoes just a few weeks ago. I started a topic on here along the lines of doc says celiac, I'm unconvinced. Aaaaaaaand, I got all the same answers you are getting. It was frustrating and infuriating. Do these people NOT REALIZE what a PITA going on this diet is going to be? Do they not KNOW how much this will disrupt MY life? I mean, REALLY!

But, I hate to say it: they are all correct. And yeah, it sucks. But if you care about your health, you will come around and realize that the diet is the only way to TRULY know for certain, especially in the face of uncertain tests. I'm not exactly happy about having to do this diet either. And, yes, it will disrupt my life and cost me more money. However, I have hope now that maybe, just maybe, I'll notice a difference and not feel so fatigued. And maybe, just maybe, I won't be known for forgetting EVERYTHING. Only time will tell. And, really, I WILL be eating healthier, which has always been something I intended to do...some day.

Best of luck. It's a difficult diagnosis to swallow at first, but you will find that you will be up to the challenge.

[Roda]

I was SO in your shoes just a few weeks ago. I started a topic on here along the lines of doc says celiac, I'm unconvinced. Aaaaaaaand, I got all the same answers you are getting. It was frustrating and infuriating. Do these people NOT REALIZE what a PITA going on this diet is going to be? Do they not KNOW how much this will disrupt MY life? I mean, REALLY!

Yep honey, we all know how much a PITA it was and is. I was cruising along fine doing gluten free for myself but when I put my youngest son gluten free in Nov. I found that it became a little harder. He would want things that I either didn't eat or couldn't eat so I found myself having to check things that I normally wouldn't and didn't buy. At home for meals there really wasn't much of a change since I have always cooked our meals gluten free, but having to pack a lunch everyday seemed a big pain. I took for granted that he could just buy his lunch before. I am happy to report now things are running smoothly again...that is until my oldest son ends up gluten free eventually. I don't expect any more problems since younger brother paved the way for him.

[atyose]

Thank you everyone for your quick responses! I really appreciate them because I don't have anyone to talk this over with- my husband refused to even discuss my tests because he deemed them too personal a subject! Thankfully, he's supportive of me trying a gluten free diet. I don't think I would have tried the diet had it not been for your responses and maybe I would never have the chance to feel better. I had no clue how to continue working when I woke up wanting to go back to bed and then took a 4 hour nap. Now I'm really ready to try the diet to see if gluten is the source for my problems. My doctor seems convinced it is. Thank you again and I'll be back on these boards- hopefully to help others someday.

Carol

[mushroom]

Good for you, Carol.. Stick around and if we can help you with anything else, just ask.

[cap6]

Give your doc a hug & embrace your gluten-free diet! Too many go for years suffering. Count yourself blessed!

[ocean girl]

What a great doctor you have. Mine was not putting it all together. I am putting it together for him. i was put on a mild antidepressant in Dec. I fought it...he gave it to me at the beginning of Dec. and out of desperation I finally took it towards the end of the month. I had been having anxiety...dizziness, rapid heart rate and a panic attack or two since September. Never have I ever had this. I also began having stomach issues..noticeable by Oct. right side pain and terribly upset and gassy bloated beyond what I had been for quite some time...just thinking it was extra weight. I happened to cut a lot of gluten out thinking I had an overgrowth of stomach yeast. I have also had muscle twitching and vision disturbances. In Jan. my ob/gyn tested me for Vitamin D deficiency...which I tested positive for. He put me on a high dose I take twice a week. He said that should do it ....unless of course I have absorption issues. What causes that?? : ) So that put a ? in my head, and I had several family members say maybe you have celiac. My stomach had been better since about Nov.

I finally decided to start eating bread and cereal again beginning of February. WIthin 5 days the side pain came back, my face had rebroken out, my knees were hurting again (who knew that those things that had changed for me...were a sign of wheat issues??). My dizziness came back a few days after that as well as the muscle leg twitching.

I made an appt. with my primary to do the blood panel test and to test for more vitamin deficiences. He typed away on his laptop when I came with my celiac.com info. I had been reading about the depression/anxiety being linked to soo many people. He filled out the paperwork for me and I had my blood drawn. He really did not say much to me....I wonder if he was feeling bad...he had long conversations with me before when talking about going on the antidepressant in Dec. I have not heard back as to my results yet, and I had told him that day that I was curious about the test, more so the vitamin one, and regardless of positive or not...I was going gluten free hard core that day.

3 days gluten free my face began clearing up again. The first time I think it took over a month....I was still ingesting some gluten though here and there in the fall...and maybe it takes longer the first time clearing your body of it. The muscle twitching is almost gone by day 6 and my face completely cleared by day 4. The dizziness is now subsiding again day 6-7. I woke up this morning not feeling any dizziness. My husband is now convinced as am I....so glad I had the facial thing for him to see! : )

I am seriously considering doing the enterlab stool test for myself and our children. My husband is ready to do the diet with me after I have been talking nonstop about books I have purchased...the gluten connection, Elizabeth Hasselbeck's book and others. He has some issues that we are wondering will clear. I read a great article about neuro and celiac that I am sharing below. And yes, kiss your doctor. You need to try the diet for a month or more. The easiest way to do it is to eat meat, veggies and fruit. I love brown rice and quinoa is awesome. Buy some gluten free bread and some luncheon meat (boars head or other) that you know are gluten free. I have a great app on my iPhone that I use now to shop in a regular store.... Is that gluten free? or buy books and look up online. We ate spaghetti last week, corn pasta, and Paul Newman sauce (most if not all of his items are gluten free), had Ortega tacos ...all gluten free, and my kids will eat brown rice, veggies and meat. It was not hard cutting out the bread and sweets when I found my stomach healed. So many restaurants have gluten free menus now too. Just do your research before you go out....lessens the frustration.

Open Original Shared Link Use This To Link To Spam.com/?Brain-And-Neurological-Problems-Affect-Almost-Half-Of-Celiacs-Even-With-A-Gluten-Free-Diet&id=904155

[atyose]

Thank you everyone for your quick responses! I really appreciate them because I don't have anyone to talk this over with- my husband refused to even discuss my tests because he deemed them too personal a subject! Thankfully, he's supportive of me trying a gluten free diet. I don't think I would have tried the diet had it not been for your responses and maybe I would never have the chance to feel better. I had no clue how to continue working when I woke up wanting to go back to bed and then took a 4 hour nap. Now I'm really ready to try the diet to see if gluten is the source for my problems. My doctor seems convinced it is. Thank you again and I'll be back on these boards- hopefully to help others someday.

Carol