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

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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.

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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! :)

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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.

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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.

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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.

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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.

:)

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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.

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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

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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!

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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.

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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!

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