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

Ok - Now I Am Frustrated - Do I Have This Or Not
0

12 posts in this topic

I am frustrated and confused. Allow me to explain.

I am a 55 year old male with a history of symptoms that sound a whole lot like celiac disease... but more on that in a minute

I had an endoscopy last week and met with the gastroenterologist today. Mind you, there was no blood test before this. I went from a conversation with my GP, to a visit to the GE, to an endoscopy.

He told me he saw no signs of celiac and when I pressed for details said there were no signs of ulcers. He is a nice enough person, but he is not long on explanations and I strongly suspect he knows little about celiac disease. He told me genetic screening is "95% accurate" and sent me down the hall to get two blood tests.

OK, here is a brief medical history... and the reason I am having real trouble making sense of all this.

I was a sickly kid... ate like a horse but could never put on weight. Major leg cramps and fatigue. They kept me home from school for all of 3rd grade. I was extremely skinny until 40 at which point I put on a pot gut and 20 pounds and developed perpetual, non-stinky gas.

History of debilitating migraine headaches, skin rashes, small blisters on the skin...

There is unambiguous celiac disease in the family (nephew)

We have autoimmune diseases in the family (mother, brother, et al. w/diabetes)

5 years ago I tried to donate blood and was rejected for having low iron. I also had severe constipation, some black stools, abdominal pain, low blood pressure, and a high white blood cell count. An endoscopy (no biopsy for celiac disease) showed nothing and after a few other tests my iron counts and wbc's bounced back into the normal range so they concluded I must have had some minor internal bleeding they could not find... inconsequential if it did not repeat.

This past year I started to deal w/major brain fog, intense tinitis, fatigue, intense gas pains, burning between my shoulder blades, and constipation. To that point, believe it or not, I was clueless. I.e., I had no idea my symptoms resembled celiac disease. I had found ways of muddling through... but I began to realize I needed to find some answers and began to try to connect the dots between my diet and the intense brain fog incidents happening several times a week.

Then things got worse. I had a stool w/blood seeping from it (otherwise normal), then 2 - 3 weeks of dark, dark diarrhea, foul gas... sharp pains in my stomach... sleeping 12 - 14 hours a day.... and there is more, but that's enough to give you the idea.

Over the past month I have gone gluten free twice -- the first time as a self test. I cut it out again after the endo. Both times I began to feel better almost immediately. The pooping pattern is normal for the first time in years... gas is 80% gone... energy is back. I'm not 100% yet, but I'm getting there.

So, I ask you. What is going on? I have laid it all out honestly. Am I misreading these symptoms? Do these doctors know what they are doing?

0

Share this post


Link to post
Share on other sites


Ads by Google:

Welcome to the forum.

I am afraid the answer to your question is a probable "maybe". If not celiac, at least gluten intolerance/sensitivity. The difficult thing for those whose tests show up negative is that the symptoms may be exactly the same, and one person can be positive and the other negative. Some people believe that those with all the symptoms will eventually develop diagnosable celiac if they do enough damage to themselves....?? There are a lot of maybes with this disease. And just because you carry a recognized celiac gene does not mean that you have it, just that you are more likely to have it. Frustrating, isn't it??

Is your doctor also running a full celiac blood panel on you, as well as the genetic test? Because you should have this run also. It sounds like your doctor may not be too celiac literate if he says the gene test is 95% accurate :(

If I were you I would check and make sure that he runs the full celiac panel

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

as well as the gene test. Then get copies of all your results (including the reference ranges of the lab) and post them on here so that we can take a look at them. That way we might be able to advise you better.

0

Share this post


Link to post
Share on other sites

Your symptoms are among the most common ones on the 250-or-so symptom list of gluten intolerance/celiac. Couple this with a known familial incidence of celiac and other autoimmune conditions, plus your dramatic response to the gluten-free diet, and I would strongly suspect that you have the illness. So many members here have had experiences with doctors who know very little about this disease. It seems to be a common professional ignorance, unfortunately. So, I would never rule out the diagnosis of gluten trouble on a doctor's (even an endocrinologist's) discounting of it.

There can be false negatives with both the blood panel and the endoscope (30 % of all negatives, many sources say). A lot of people on here, myself included, believe that the only truly accurate diagnostic tool for celiac/gluten intolerance is dietary response. You have a strong positive on that one! :)

0

Share this post


Link to post
Share on other sites

That is very helpful. The "95%" line confused me as well. From the reading I have been able to do in the last few weeks that sounds off the mark. I do not know if he ordered a full blood panel or not. I know I paid for two blood tests. One of them was for genetic screening. I am going to have to ask for complete print outs as these doctors want to talk in terms of positive and negative and I want to see the actual numbers. When I get more information I will post it.

0

Share this post


Link to post
Share on other sites
Your symptoms are among the most common ones on the 250-or-so symptom list of gluten intolerance/celiac. Couple this with a known familial incidence of celiac and other autoimmune conditions, plus your dramatic response to the gluten-free diet, and I would strongly suspect that you have the illness. So many members here have had experiences with doctors who know very little about this disease. It seems to be a common professional ignorance, unfortunately. So, I would never rule out the diagnosis of gluten trouble on a doctor's (even an endocrinologist's) discounting of it.

There can be false negatives with both the blood panel and the endoscope (30 % of all negatives, many sources say). A lot of people on here, myself included, believe that the only truly accurate diagnostic tool for celiac/gluten intolerance is dietary response. You have a strong positive on that one! :)

Love the dogs.

Thanks. I am staying with the gluten free diet... at least for now as I am feeling better than I have in a long time. I would just like them to rule this in or out so I can attack the real problem and get on with my life.

0

Share this post


Link to post
Share on other sites




Where can I find the most dependable information on diagnosis ... for myself and my family and for future conversations with my doctors. I'm beginning to realize I am going to have to advocate for myself whatever this diagnosis is.

0

Share this post


Link to post
Share on other sites
Where can I find the most dependable information on diagnosis ... for myself and my family and for future conversations with my doctors. I'm beginning to realize I am going to have to advocate for myself whatever this diagnosis is.

This is a tough one. At the many meetings of the Ottawa chapter of the Celiac Association, I cannot count the number of people I have sat beside who have gone through years, sometimes a lifetime, with debilitating symptoms of celiac and been diagnosed with everything but. Taking their lives in their own hands, they finally did their own research, were shocked into silence as they stumbled upon "celiac disease -- symptoms", and began a gluten-free life, one where their symptoms disappeared.

You do not need a doc's prescription nor permission to use the diet as your diagnostic tool and your treatment. Some people need the "official, on-paper" diagnosis, but as I said, the medical testing available right now is not completely reliable.

I'll just add that my husband was diagnosed through stool testing (Enterolab). He had "negative" results on the blood panel and the endoscope, but figuring he must have trouble with gluten due to his classic symptoms and a brother who was diagnosed with celiac a few years ago, he sprung for the stool testing. And there it was -- a huge antibody count.

Wish I could be of more help. .. . ....or rather, I wish gluten issues were easier to diagnose in the lab.

:)

0

Share this post


Link to post
Share on other sites
This is a tough one. At the many meetings of the Ottawa chapter of the Celiac Association, I cannot count the number of people I have sat beside who have gone through years, sometimes a lifetime, with debilitating symptoms of celiac and been diagnosed with everything but. Taking their lives in their own hands, they finally did their own research, were shocked into silence as they stumbled upon "celiac disease -- symptoms", and began a gluten-free life, one where their symptoms disappeared.

You do not need a doc's prescription nor permission to use the diet as your diagnostic tool and your treatment. Some people need the "official, on-paper" diagnosis, but as I said, the medical testing available right now is not completely reliable.

I'll just add that my husband was diagnosed through stool testing (Enterolab). He had "negative" results on the blood panel and the endoscope, but figuring he must have trouble with gluten due to his classic symptoms and a brother who was diagnosed with celiac a few years ago, he sprung for the stool testing. And there it was -- a huge antibody count.

Wish I could be of more help. .. . ....or rather, I wish gluten issues were easier to diagnose in the lab.

:)

Very helpful. I am learning more every day. "stool testing"? Never heard of it, but I will follow up on the lead. Sadly, the official paper test may be more necessary this side of the border. If the insurance companies do not see the diagnosis, they are not going to spring for the costs. Many thanks.

0

Share this post


Link to post
Share on other sites
Very helpful. I am learning more every day. "stool testing"? Never heard of it, but I will follow up on the lead. Sadly, the official paper test may be more necessary this side of the border. If the insurance companies do not see the diagnosis, they are not going to spring for the costs. Many thanks.

I am fairly certain that there is only one lab, at least in North America, that does stool testing for gluten issues, and it is in Atlanta. Called Enterolab.. . .. .... . ..they are in some circles a controversial subject, and there has been much written and debated here on this forum about Kenneth Fine and his approach. Here is their site:

https://www.enterolab.com/Home.htm

0

Share this post


Link to post
Share on other sites
I am fairly certain that there is only one lab, at least in North America, that does stool testing for gluten issues, and it is in Atlanta. Called Enterolab.. . .. .... . ..they are in some circles a controversial subject, and there has been much written and debated here on this forum about Kenneth Fine and his approach. Here is their site:

https://www.enterolab.com/Home.htm

Thank you. That is very helpful information. I get my blood test results back on the 15th. If they find nothing there, I will likely follow up with Enterolab.

This past week I had further confirmation I am on the right track. I have been gluten free since November 25 and, on balance, am feeling better than I have in years. The energy is back, the tarry stools are gone, and I am not sleeping all the time. Then, this past Monday I had a rough spell where I had terrible brain fog and was dragging. We began to check labels of things I consumed during that time and, sure enough - I started an iron supplement that morning and I had failed to read the label. It included wheat germ extract. Needless to say I through the supplement out. I felt better by the afternoon and have been zooming ever since.

Strange. Something that minor could render me incapable of working!

0

Share this post


Link to post
Share on other sites

I got the results of two blood tests yesterday. The doc said I have the genetic markers for celiac disease, but the other blood test was negative. He said the genetic test, taken together with the improvements I experience on a gluten free diet, leaves no doubt I am dealing with a wheat allergy "at least." He said he was stopping short of calling it celiac because he wanted to spare me difficulties with insurance... that and a second endoscopy just makes no sense given everything else. I can live with the ambiguity, especially since I am feeling so much better most days. But I need to request a copy of the blood tests. I'd like to see the levels for myself.

Anyway, I suppose it's time to move on to another part of the forum.

0

Share this post


Link to post
Share on other sites

Just to share some symptoms. I had black stools and bleeding sometimes also. That followed years of green stools. Lovely brown now though. Anyhow, on the endoscope, if the doctor didn't send a biopsy to a lab for analysis, it is doubtful he could say you didn't have celiac. There is a reference called the Marsh scale that rates the damage at a microscopic level. In severe damage cases they can see the problem just looking, but in other cases the damage only shows under a microscope. That is it shows if they took a biopsy from an area currently being attacked.

Congrats on starting the diet and finding a way to feel better!

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
      104,116
    • Total Posts
      919,451
  • Topics

  • Posts

    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      61,155
    • Most Online
      1,763

    Newest Member
    AndiR
    Joined