I think Dr. is Wrong- Advice Please!

brooke12 · September 12, 2016

My brother was recently diagnosed with Celiac Disease, so I had my family doctor test me for celiac and food allergies. His assistant called with my results saying that I don't have Celiac, just maybe a slight gluten allergy and should try not to eat too much gluten. I had done my research prior to her call and don't know that I totally agree. My results seem suggestive of celiac disease to me.

My lab results show that I have a dairy allergy.

Endomysial Antibody IgA Titer 1:40 (Reference Range <1:10)

Tissue Transglutaminase Ab, IgA 10 (Reference Range 0-3 negative, 4-10 Weak Positive, 11+ Positive)

I typically eat a low gluten diet because glutenous products (breads, etc) give me heartburn and generally make me feel bad. I would assume that if I had been eating more gluten, my ttg could have easily been an 11 pushing me into the positive range. And the dr didn't even address the Endomysial result. Is 1:40 positive? Weak positive? I've read on here that any positive is positive. Is that correct? I'm just a little confused. I would like a definitive answer since going totally gluten-free is a little overwhelming. I don't want to do it if I don't have to.

I would love any advice!

bogwaterphil · September 12, 2016

Brooke12, it is my understanding from researching what Celiac Disease is in the first place, on this website it has wonderful information. I just learned that celiac disease is an auto-immune reponse the ingestion of gluten products. So yes you are correct, you most likely will need to eat a full gluten diet for a couple of weeks before getting tested again. What may help with the heart burn and other digestive issues, is peppermint oil products, i.e. starlight mints from Walmart or other similar store , the vegetable Anise can help , and turmeric has wonderful anti-inflammatory benefits.! Perhaps others may have more to share, my prayers are with you and all of us who suffer this condition!

cyclinglady · September 13, 2016

5 hours ago, brooke12 said:

My brother was recently diagnosed with Celiac Disease, so I had my family doctor test me for celiac and food allergies. His assistant called with my results saying that I don't have Celiac, just maybe a slight gluten allergy and should try not to eat too much gluten. I had done my research prior to her call and don't know that I totally agree. My results seem suggestive of celiac disease to me.

My lab results show that I have a dairy allergy.

Endomysial Antibody IgA Titer 1:40 (Reference Range <1:10)

Tissue Transglutaminase Ab, IgA 10 (Reference Range 0-3 negative, 4-10 Weak Positive, 11+ Positive)

I typically eat a low gluten diet because glutenous products (breads, etc) give me heartburn and generally make me feel bad. I would assume that if I had been eating more gluten, my ttg could have easily been an 11 pushing me into the positive range. And the dr didn't even address the Endomysial result. Is 1:40 positive? Weak positive? I've read on here that any positive is positive. Is that correct? I'm just a little confused. I would like a definitive answer since going totally gluten-free is a little overwhelming. I don't want to do it if I don't have to.

I would love any advice!

That EMA is positive and it is specific to celiac disease (unlike the TTG which can be impacted by other autoimmune disorders). Even one positive in the complete celiac panel warrants a referral to a GI. He/she may run the entire panel again and include the DGP (keep eating gluten). I personally tested positive only to the DGP and yet my biopsies revealed a Marsh Stage IIIB (mod to severe damage). so, it just takes ONE positive!!!!! Then He/she will probably order an endoscopy to obtain four to six tissue biopsies.

Read up! Learn all that you can. Most doctors are clueless about celiac disease. Try to get a referral from a celiac savvy GI (ask if they have any celiac disease patients).

The University of Chicago has a great celiac website. Read through it. Bring copies of diagnostic recommendations. They keep up!

Keep all your records. Take notes at the doctor. Only you can take care of you!

Good luck and ask questions. We are hear to help!

cyclinglady · September 13, 2016

Oh, there really isn't such a thing as a gluten allergy. Nope. Google it. There is an allergy to wheat though. And you can do the research, but allergy testing is not super accurate -- especially the blood tests. Did you do any skin testing? So, this tells me that your doctor may be clueless. So many are and I am not being disrespectful. My own PCP admits she knows little about celiac disease (met her after my diagnosis). But my doctor neighbor says if you don't know something, you do the research on Dr. Google. Yes, that's true! Doctors can not know everything, but they should be able to research and from what you wrote, it sounds like he's not researching or keeping up with current research.

You might be allergic to dairy (but that seems suspect. Allergist will tell you allergies to milk proteins (e.g. casein). This might be true, but celiacs are often lactose intolerant as the enzymes needed to digest milk sugars (lactose) can not be released through damaged or non-existent (in some celiacs) intestinal villi. Often, lactose intolerance resolves (like me).

I would strongly recommend a GI visit.

brooke12 · September 13, 2016

Cyclinglady thank you so much! I really appreciate your response and all the info you shared. When the PA initially called me with lab results I actually told her I didn't think she was correct and shared some of my research with her. She told me she would talk to the dr and call me back. The answer didn't change when she called back that evening so I've been doubting myself. I love that your doctor neighbor is willing to google when needed. Apparently mine isn't. looks like it's time to find a new doc.

I've been eating a strict gluten-free diet for the past few days already. I guess it's time to decide whether I really need all the testing and biopsies or if I should just continue eating gluten-free as if I have Celiac Disease. I'm not sure I want to maintain a diet with the necessary amounts of gluten in order to have more testing done.

cyclinglady · September 13, 2016

1 hour ago, brooke12 said:

Cyclinglady thank you so much! I really appreciate your response and all the info you shared. When the PA initially called me with lab results I actually told her I didn't think she was correct and shared some of my research with her. She told me she would talk to the dr and call me back. The answer didn't change when she called back that evening so I've been doubting myself. I love that your doctor neighbor is willing to google when needed. Apparently mine isn't. looks like it's time to find a new doc.

I've been eating a strict gluten-free diet for the past few days already. I guess it's time to decide whether I really need all the testing and biopsies or if I should just continue eating gluten-free as if I have Celiac Disease. I'm not sure I want to maintain a diet with the necessary amounts of gluten in order to have more testing done.

Only you can decide what is best for you. I got my official diagnosis 12 years after my own husband went gluten free based on what we know now as poor advice from my allergist and his GP. They were right, he did and still has an issue with gluten. AI issues run rampant on both sides of our families. But does he really have it? We'll never know because he refuses to do a gluten challenge. Can I blame him? No way! Luckily, with my diagnosis, we can be assured that my daughter can be tested for the rest of her life. Other family members have been tested but so far are negative (not everyone wants to really know....).

If you think you can stick to the gluten-free diet without a diagnosis, then go for it. My hubby had the will power (though it was tough the first year) to succeed. Personally, I needed a diagnosis. I knew what it meant to give up gluten -- it's hard.

Finally, do not give up just yet. You still have time to write a certified letter to your doctor asking why he won't order the rest of the celiac panel or provide a referral when you have a positive on the celiac panel that is specific to celiac disease (an email is effective too):

Open Original Shared Link

If it is in writing, the doctor can not ignore the request. I suppose he could if he practices alone, but there are very few doctors who do that anymore. Document, document, document and keep your records!

ironictruth · September 13, 2016

7 hours ago, cyclinglady said:

Ditto here. DGP was my only positive as well. That and DQ2 gene. Did you get gene tested?

Ugh, do NOT screw around with a GI doc who does not seem like s/he understands celiac. Get one you feel confident with. I suffered 9 months and counting of ill health and no answers after a gluten challenge with a GI who was not supportive or knowledgeable (he was shocked I was not allergic to wheat on my allergy panel).

And if you do the diet, stick with it religiously. I did not do that. I still continued to eat out and order off Of gluten-free menus. My biopsy last year was normal and now I have inflammation and white cell infiltration and a lot of pain. I thought I was gluten-free since March. But got glutened at the end of August this year and we're not even sure how that happened. my DGP was negative in July and elevated again in August. Checking it was at the advice of cycling lady!Probably just a crumb at my boyfriend's house since his kitchen is not really gluten-free safe yet. so you can do some damage without even knowing it. Definitely make sure you get doctors who have your back.

brooke12 · September 13, 2016

Can anyone tell me what is required for a gluten challenge? What is the amount I would need to consume every day? For how long? I've seen a lot of different information in my research.

cyclinglady · September 13, 2016

21 minutes ago, brooke12 said:

Can anyone tell me what is required for a gluten challenge? What is the amount I would need to consume every day? For how long? I've seen a lot of different information in my research.

The University of Chicago (very conservative estimate) recommends 1 to 2 slices of bread per day (or equivalent) for 8 to 12 weeks for the blood tests and 2 to 4 weeks for the biopsy. It can take a lot of time to build up antibodies that are measurable in the blood. If you were on the gluten-free diet for around a week you should be okay. Dr. Fasano mentioned somewhere that as in as little as two weeks antibodies can drop. But everyone's different.

jbeilfuss · September 15, 2016

Hi brooke12,

I'm sorry your doc really isn't up on what celiac is. But I think you should get to a decent GI doctor who can take your blood test results and follow up with getting you a diagnosis. I was officially diagnosed in May of last year and I am glad to have it be official, even as the gluten challenge was definitely a challenge. Your blood tests pretty much point to celiac.

If you are interested in one person's experience of going through the diagnostic process, check out the first thread I posted in this forum. I kind of used it as a chronology of what my own experience was with the testing, gluten challenge, and biopsy. Also, I am in the USA so you have an idea of the healthcare system I was working with.

Good luck!

brooke12 · October 16, 2016

Just an update-

I tried doing a gluten challenge in preparation for an appointment I scheduled with a GI. I made it 8 days and was miserable. So sick. So much abdominal pain, joint pain, foggy head, heartburn, etc. I couldn't go any longer. I have young children and just can't manage daily life while eating gluten in such high amounts. I decided to call it celiac disease and move forward with healing.

I have suspected my 3 year old daughter might have celiac and decided to have her tested.

Her labs came back SO HIGH! Ttg >100 EMA titer 1:640. Yes, SIX HUNDRED FORTY!!!! I am so glad I questioned my dr's diagnosis. It is obvious we both have it.

I will post elsewhere for answers, but does anyone have experience with such high levels? Will they be harder to bring down? I've read that some people have issues with rice and oats (gluten free). Should I be avoiding those? Should I have further testing done for any other health issues or allergies?

My doctor (once again) seemed oblivious when giving me the results. His nurse said he just said "she tested positive for celiac disease." I requested a referral to a pediatric gastroenterologist. But I would like to start doing everything I can in the meantime. The doctor gave me nothing other than the positive diagnosis. I would LOVE any advice and suggestions for my little one.