Doubts About Diagnosis

[Josep]

Hello everyone, I am writing this post because some doubts regarding my celiac disease have been rising lately and I want to consult more knowledgable people than me

I'm 24 and my story starts 3 years ago. After an Appendectomy, a few weeks later I started having extreme fatigue, drowsiness, weakness that seemed to worsen after eating bread in breakfast and having lunch with pasta. During my childhood, other than being often called a "clumsy" child and being quite thin (but never underweight), I never had problems such as failure to thrive or diarrhea. I have always had a bit of low hemoglobin (around 12/12,5) with little iron that was never corrected with supplements.

 

I am a medical student and during a pathology class, my professor spoke about celiac disease and I thought the symptoms fit me well. I asked my GP if she could prescribe me a full celiac blood test panel which she did. Results were negative but she thought it was better if I did a endoscopy with biopsies. The day before the biopsy, I had a severe bout of gastroenteritis and asked the gastroenterologist if it would not counfound the results. She said celiac lesions were quite specific and gastroenteritis could not do something similar.

Results of the endoscopy were:

3 fragments from DII and one from stomach antrum:

-The 3 fragments from DII show mucosal atrophy with raised number of lymphocytes and plasmocytes in the basement membrane with epithelial permeation with lymphocytes. With hypertrophy of other vilosities. Shows aspects of Celiac Disease March Classification 3B

-Stomach Antrum shows chronic gastritis, not atrophic, without H.pylori and low activity

My doctor said I was Celiac and I started going gluten-free. After a year I did a follow-up endoscopy and all came normal except the stomach antrum still with the same problem.

Long story short (sorry for all the boredom ), I am having a Gastroenterology class (love it and really planning on being one) and my professor checked my diagnosis and exams and said it was impossible for me to be celiac with the antibodies all negative and that the positive biopsy was due to the gastroenteritis and that me being better now is probably due to placebo effect and that I am kinda stupid on being gluten-free since it generally starts much younger with symptoms since childhood.

So my first question is: Could I be Celiac with negative serology and a positive biopsy?

My second question is: Since 2 months ago, I have been feeling weak again (I wake up at morning feeling like I was trampled by a truck), with some weakness mainly near my quadricipets muscle and pain in my knee and when I bend my fingers, as well as some fasciculations everywhere that annoy me sometimes but that stop (haven't had any for 1 week). It generally eases off during the day and becomes better and it hasn't adversely affected my running and gym training. I went to a neurologist to rule out MS and he said I was all clean and couldn't see anything abnormal.

I am as gluten-free as always (only thing new I have picked from medical school was drinking coffee but only 2 cups a day). Could it also be related to Celiac Disease? In the last blood testing my GP prescribed, all values came normal, other than vitamin D (was the only one she checked and she didn't check any electrolytes) which came abnormally low (normal is 32 and I had 9). She said it was due to lack of sun and prescribed me supplements. Could it also be related to the Celiac? 

Sorry for all the questions but I was really good and healthy for these last 3 years and this sudden weakness really is bringing me bad memories from before I was diagnosed. Thanks for the attention
 

[kareng]

You may have already checked here but

 

Open Original Shared Link

[cyclinglady]

Are you sure you had an entire celiac panel? This includes:

-tTG IgA and tTG IgG

-DGP IgA and DGP IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

(Source: NVSMOM -- )

In my case my ttg tests were negative. Weird, huh? Only the DPG IGA was mildly positive. I am not IGa deficient. Had my doctor run only the standard TTG and IGA screening tests, I would not have been diagnosed (biopsy revealed Marsh IIIB). I was anemic, but was 1) going through menopause with heavy periods that were also attributed to being hypothyroid and 2) I have mild thalassemia. Both of these masked iron-defciency anemia resulting from celiac disease.

Double check to see what tests were run.

Your new symptoms could be related to gluten leeching into your diet or you could be developing an another autoimmune disorder.

I hope you can figure it out!

[Josep]

Are you sure you had an entire celiac panel? This includes:

-tTG IgA and tTG IgG

-DGP IgA and DGP IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

(Source: NVSMOM -- )

In my case my ttg tests were negative. Weird, huh? Only the DPG IGA was mildly positive. I am not IGa deficient. Had my doctor run only the standard TTG and IGA screening tests, I would not have been diagnosed (biopsy revealed Marsh IIIB). I was anemic, but was 1) going through menopause with heavy periods that were also attributed to being hypothyroid and 2) I have mild thalassemia. Both of these masked iron-defciency anemia resulting from celiac disease.

Double check to see what tests were run.

Your new symptoms could be related to gluten leeching into your diet or you could be developing an another autoimmune disorder.

I hope you can figure it out!

 

I had these done:

-tTG IgA and tTG IgG

-DGP IgA and DGP IgG

-EMA IgA

Gluten leeching in my diet is hard since I have been eating as I always have done . I thought about developing another autoimmune disorder but with those symptoms I was mostly thinking about Hashimoto's Thryoiditis or MS and both have already been excluded as my thyroid is pretty much normal

[Josep]

You may have already checked her but

 

Open Original Shared Link

 

Didn't know the site. Thanks for the advice

[cyclinglady]

Three years gluten free....hum.....you must have been glutened during that time. Most of us can tell when we have been glutened even if we do not get noticeable abdominal symptoms. it sounds like your symptoms went away on a gluten-free diet, but did they come back during an accidental glutening?

When you said your thyroid is normal, I take it that you had antibody testing to rule out Hashimoto's?

[Josep]

Three years gluten free....hum.....you must have been glutened during that time. Most of us can tell when we have been glutened even if we do not get noticeable abdominal symptoms. it sounds like your symptoms went away on a gluten-free diet, but did they come back during an accidental glutening?

When you said your thyroid is normal, I take it that you had antibody testing to rule out Hashimoto's?

It could be a glutening but as I said, I don't remember eating acidental gluten (Most people joke with me due to how paranoid I am with gluten cross-contamination. I cook my own food and I exchanged all utensils when I discovered I was celiac for new ones )

Nope, but both TSH, T3, T4 and PTH have normal values in my blood test so that was why I was not very much worried with the thyroid

[squirmingitch]

Josep, I did not see that you had the -total serum IgA and IgG (control test) done. You could be deficient & therefore your bloods come up negative. Recall that link Karen gave you? This one?

Open Original Shared Link

[psawyer]

Shows aspects of Celiac Disease March Classification 3B

.

This, as I see it, is a conclusive diagnosis of celiac disease, unless there is positive evidence that something else caused it. While there are other rare things that can damage the villi, that level of damage is almost certainly celiac disease in my understanding. That is the same level of biopsy-confirmed villi damage that I had.

[beth01]

I say tell your Gastro Professor to do a little more recent research., ask how a couple day bout of gastritis can pretty much destroy the inside lining of your small intestine?  Most " old school" doctors still have the antiquated beliefs that Celiac is a childhood disease.  Many of us on here have medically proven otherwise.

 

Did you have TPO Antibodies drawn also, or just the regular thyroid panel?  Without the TPO, it's hard to diagnose Hashi's.  Most people can be borderline hypo with still normal TSH results but have TPO antibodies through the roof.

[Josep]

Thanks for all the kind advice. Regarding the doubts, I haven't done an IgG/IgA control test as Gastros say they never do it in my country because it's very rare for one person to be deficient on both IgG/IgA and they always prescribe both serotype antibodies.

I went to my GP today and she said that with my thyroid levels there was no need to suspect Hashi and didn't ask for antibodies. However, she did say my iron deposit levels were low again and my magnesium, vitamin B12 and C were on the lower limits of the normal so she prescribed supplements for all that. I hope that helps solve my problems with muscular weakness lately.

Other than that, I'm worried. I have been gluten-free for 3 years (I think) and my last endoscopy follow-up was all normal and healed. Could my low levels of vitamins mean I am not absorbing them well and I'm having refractory celiac disease or even 3 years is not enough for the intestine to heal after 22 years eating gluten?

Thanks again

[Josep]

I say tell your Gastro Professor to do a little more recent research., ask how a couple day bout of gastritis can pretty much destroy the inside lining of your small intestine?  Most " old school" doctors still have the antiquated beliefs that Celiac is a childhood disease.  Many of us on here have medically proven otherwise.

 

Did you have TPO Antibodies drawn also, or just the regular thyroid panel?  Without the TPO, it's hard to diagnose Hashi's.  Most people can be borderline hypo with still normal TSH results but have TPO antibodies through the roof.

I would forgive him if he was really old-school but the sad part is that he finished his residency 1 year ago. He has no excuse not to know cutting edge research on that topic

[cyclinglady]

Josep,

Here is a recent (3-31-2015) transcript of a conference discussing possible pharmaceutical interventions for those with celiac disease that one of our members posted:

Open Original Shared Link

It is rather long, but the introductions are done by Joseph Murrary of the Mayo Clnic and Alessio Fansano (Open Original Shared Link). Dr. Murray stated that healing for adults takes much longer than previously thought. Remaining gluten free is difficult for anyone. He said that the burden of treatment falls completely on the patient. What other disease relies on the patient completely for treatment? We are diagnosed (if we are lucky) and then let go for fend for ourselves.

The rest of the conference is dedicated to possible new drugs to off-set glutenings and is interesting.

Another interesting event took place on this forum. We had a very intelligent person who experienced a relapse in symptoms. His doctors were perplexed and seriously thought he had refractory celiac disease. Turns out he was getting a tiny exposure to gluten! Whew! We are glad that he is okay!

I am just trying to let you know that you may be getting glutened somehow...after all, you are living and working in a hospital/campus setting. I know our local university has glutened many a student (working on that issue). I know that even getting safe food as a hospital inpatient is daunting!

So, please do not jump to a refractory diagnosis so soon!

See if you are getting gluten in your diet or some exposure at work/school. Make sure your supplements are in forms that your body can use (e.g. Methycobalamin sublingual vitamin b-12).

Take care!

[Galixie]

To jump tracks a bit,

You have mentioned that you have both chronic gastritis and borderline low B12. Have you been tested for Pernicious Anemia?

There are myriad symptoms related to B12 deficiency and you don't have to become anemic before experiencing them. This is just something to consider. Do you have any relatives who have had B12 deficiency or Pernicious Anemia? Like celiac, it often runs in families.