Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Should I Get A Second Opinion?
0

4 posts in this topic

Hi everyone, I've been reading these forums for some time now and after going through a stressful year of trying to determine if I have celiac or not. A little bit about myself-- I've had eczema (in the form of what looks like bubbles under the skin that are extremely itchy on hands and feet typically), randomly swelling joints (hands, feet, knees and lasts for days making it quite painful to walk/move around), and hormonal imbalances which caused irregular periods for as long as I can remember. Since last year, I've been experiencing constipation, diarrhea, feeling really fatigued (regardless of sleep and trying to eat a nutrient rich diet along with taking multi vitamins), moodiness (almost as if it were depression) on a nearly daily basis plus the eczema suddenly started to spread over other parts of my body and the joint swelling seemed more frequent. Top that with my hair rapidly thinning no matter what I tried, and needless to say I was extremely worried. I was exercising regularly, eating healthily (mostly eating lean protein, lots of vegetables and fruits, and whole grains), and drinking 3 liters of water a day yet the symptoms were still there.

I went ahead and ordered an Entero Lab test in August and here are the results:

Gluten/Antigenic Food Sensitivity Stool/Gene Panel

Fecal Anti-gliadin IgA 185 Units (Normal Range is less than 10 Units)

Fecal Anti-casein (cow’s milk) IgA 46 Units (Normal Range is less than 10 Units)

Fecal Anti-ovalbumin (chicken egg) IgA 19 Units (Normal Range is less than 10 Units)

Fecal Anti-soy IgA 19 Units (Normal Range is less than 10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0302

HLA-DQB1 Molecular analysis, Allele 2 0502

Serologic equivalent: HLA-DQ 3,1 (Subtype 8,5)

As of the middle of August when I got the results, I completely stopped eating gluten and acted as if I had Celiac. I found that my symptoms improved but I still wanted to get an official diagnosis not just for myself but for my family.

I went to my PCP in November and he ran a blood test panel telling me that I had no antibodies to gluten, only very mildly so for dairy and eggs. He suggested I stay off dairy and eggs for a week and see if my condition improved. But in terms of any kind of gluten intolerance or Celiac, he said I didn't have either. So, I started eating gluten again for that week. Towards the end of it, I woke up with my body covered in very itchy rashes that lasted the entire weekend. (This on top of my usual symptoms) I spoke to my PCP and asked him to look at the Entero results just in case and then he referred me to a GI that he said specialized in Celiac. After meeting with the GI, he told me that about a week before the biopsy, I should start eating gluten so I basically tried to OD on it for that week.

I finally had a biopsy done in early December after being gluten free from the middle of August to November, then on gluten for a week after the initial blood test, then back off gluten until the week before the biopsy, and since the biopsy I'm gluten free again.

The GI got back to me and said that my small intestine "looks fine, very good in fact" and that I have intestinal metaplasia-- there's just inflammation in my stomach (didn't say to what degree). Confusing since I don't eat spicy foods, I barely drink alcohol, no coffee (though I do drink tea that has caffeine about 2 times a week), and don't really eat too much acidic foods.Though he did say that I do have a gluten sensitivity as reported by the Entero Lab results and I don't necessarily have to avoid gluten but if it makes me feel better, then I should stay off it.

I'm thinking of getting a second opinion at the Celiac Disease Center in NYC. Do you think given my case there may have been a possibility that I got false negatives? I did eat gluten those two weeks and experienced symptoms but apparently there was no damage? Should I try to gluten challenge myself for longer and then try to get a diagnosis again?

Thanks for reading, I know it was pretty lengthy. This whole experience has just been very stressful and I don't know anyone that I can speak to that understands gluten intolerance or Celiac disease.

0

Share this post


Link to post
Share on other sites


Ads by Google:

Welcome to the board, nekome.

Your question is an innocent enough question, but it opens a Pandora's Box of answers. To be honest, there is absolutely no agreement on how long is long enough to be eating gluten once you go gluten free. While most people do start reacting to gluten immediately upon its reintroduction, it takes a while, which varies by indvidual, to build up in the bloodstream sufficient to trigger the positive testing levels. Celiac centers cannot agree, doctors cannot agree, forum members cannot agree. We have had many discussions on this subject here on the board.

The recommendatiion used to be 6-8 weeks, three to four slices of bread a day, or equivalent. You will see and hear recommendations anywhere from one or two weeks all the way to three months, from half a wheat cracker a day to the aforementioned 4 slices of bread. The beat answer I know is that you need to eat enough for long enough to give yourself the best chance of an accurate result. Weasel words, I know, but really that's where it's at.

The only testing you have had done by doctors is after being gluten free and does not really count. I do not believe that one week is nearly long enough to be back on gluten. Whether you go back on gluten and for how long depends on how badly you react when you resume eating gluten and how badly you want the official diagnosis. Apparently you break out in rashes and have joint problems and lethargy as your main symptoms. If you do not have major GI symptoms you may well be able to tolerate a longer challenge. Those with severe GI symptoms often abandon the challenge. I would suggest that 4-6 weeks with a sandwich or equivalent per day would be the minimum. Since you still have residual? inflammation in your small intestine, it could take even less than that but there is no way of knowing without doing it.

Let's get back to your rash. Have you heard of dermatitis herpetiformis (DH)? This is the skin manifestation of celiac disease. It is very itchy/painful, tends to form pustules or blisters and then rupture, tends to leave scarring. There is a whole section of the forum devoted to it. You could go to this link http://www.celiac.co...-dh-photo-bank/ and see if your rash matches any of these pictures. If this is what you have you can have a skin biopsy taken immediately adjacent to an active lesion (should be done by a dermatologist who knows what he is doing) and a positive result is a diagnosis of celiac disease.

I hope this has been of some help to you. Come back and ask any other questions you have, and again, welcome. :)

1

Share this post


Link to post
Share on other sites

I can't add anything to mushroom's excellent answer, except my own opinion would be to possibly challenge long enough to get a dermatologist biopsy for DH, but forget trying to get a biopsy by GI. I suspect if you try to go the GI route, you'll be one very miserable person long before enough intestinal damage is done. Especially since you said when you challenged for a week, the rash was all over. Many of us take much more than 1 weekend to get over it.

0

Share this post


Link to post
Share on other sites

Thank you mushroom and ciamarie, I really appreciate that you guys took the time to respond to my post. It's comforting to know that there's people I can turn to for help with this. :)

I've been gluten free since the biopsy so no rashes at the moment though I have just recently started a gluten challenge and I'm going to eat at least two slices of wheat bread each day for at least 3 months this time. I already made an appointment with the Celiac center for testing.. If it gets unbearable then I can try to bump up my appointment. I'll keep you updated!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,092
    • Total Posts
      920,313
  • Topics

  • Posts

    • I got cross contaminated some time ago & the rash came back pretty badly. I've attached a photo taken on June 11th of my back. It was also in my scalp, around my neck, on my front, shoulders, inner wrists and more.   Tonight I am not itching at all! I haven't itched all day long!!!! I can't take Dapsone because I'm allergic to sulfa drugs & Dapsone is a sulfa drug. Obviously that means I also can't take any of the other sulfa drugs that are used to treat dh after Dapsone is not an option. After those comes tetracycline. I really needed some relief! I began researching the dosage & particulars on tetracycline for dh. Extensive & exhaustive research did not pan out. The best I could find was treating Bullous phemphigoid. That said something like 500mg of tetracycline 4 times per day and about an equal amount of niacinimide. I really didn't want to take that much medication and in such strong doses. So my doctor (my PC doc) & I began experimenting. We tried Doxycycline 100mg twice a day. It seemed to be helping some but it just wasn't enough. Then we upped it to 200mg Doxycycline twice per day. It has taken about 5 days of that & I sit here not itching all day for the first time in a long, long time! This may not work for everyone. I did want to post it though as it is, at present, working for me. I am not thrilled at taking it but I have toughed this rash out before for years with no meds and I just couldn't do it again.
    • I laughed out loud at the 'little notebook' comment!😂 It has been interesting to see how much progress has actually been made over the past 10 years that there is even a notebook to be offered or a restaurant to eat in that will accommodate our 'allergy'. 10 years ago I feared that I would never eat in a restaurant again.  But the notebook comment is spot on.  Hopefully within the next 10 years restaurants will evolve enough to offer us a menu that clearly lists the delicious and extensive offerings that they have lovingly prepared just for us...and not just an ingredient list with nutritional values that take longer to read than War and Peace.   I am grateful that there are places to go that at least make the effort.  Who knows?  Eventually there may be restaurants which will have to offer menus with GLUTEN options available!
    • Thanks for posting this Adrien, it's a great list and I and others will appreciate the effort and the thought behind it. I loved my time in Malaysia and I'm glad I sampled all the food I could whilst I was still on an unrestricted diet. The good thing is that, like you say, some of the nice Malay foods are still ok. As a backpacker I survived on a lot of nasi goreng and laksa, nice to think if I return there I could still do the same Terima kasih!
    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
    • Thanks for sharing with me.  I really appreciate it.  Honestly, after a glutening last summer (still do not know what glutened me), I did not eat out for a year!  The risk was too great as my healing time took 3 months (for symptoms to subside) and six months to regain lost weight.  Our recent vacation to Europe was worth the risk  as we traveled with our entire extended family, but we were extra cautious and ate only at celiac-approved places.  Otherwise, we "dined" at markets or ate the food we brought from home.  Thankfully, we did not get glutened (at least we don't think so!)  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,122
    • Most Online
      1,763

    Newest Member
    ForeverYoung&GlutenFree
    Joined