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I Need Advice

Gentleheart

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Gentleheart Enthusiast
Gentleheart
Posted

I took several 'alternative' tests from several labs, including Enterolab, before I knew I should have at least done the doctor's blood test first and maybe an endoscopy while I was still eating gluten. Every alternative test came back very positive for gluten intolerance, likely celiac and a host of other significant allergies and intolerances. Even the genetics were right on both sides. It looked like a sure thing to me.

So I enthusiastically did the diet for the last 2 1/2 years. My symptoms aren't primarily gastrointestinal and very little if anything has improved. It's difficult dealing with my doctor when we aren't on the same page. He can't get past my now negative blood tests so I can't get anyone to test me any further in the celiac direction. The food is costly, the lifestyle isolating and difficult and I have to have all my meds compounded because of all my allergies and pay for them myself, which is about 4X the cost of regular meds. But through all of this I have no official diagnosis, no advocate and the doctor and my family are rolling their eyes a lot. So my insurance is basically useless without a diagnostic consensus and I can't get any medical professional to do anything. I feel stupid.

Dr. Fine has failed to publish and my entire inconvenient, expensive lifestyle is based around his findings. My faith is wavering. I honestly still think he's right. But I sure can't figure out what he's doing and why he is so silent.

Has anybody in my position made any progress with the medical profession? Anybody have a peptalk up their sleeve? <_<

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wowzer Community Regular
wowzer
Posted

I had a negative blood test, but tried the diet anyways. I really think I have DH, so I'm not sure that the blood test would have confirmed that. I had many symptoms dissapear after I went gluten free. I was just at my doctor and at least now he agrees that my immune system is working. If you have stuck with the diet for this long, hasn't it helped some even?

cyberprof Enthusiast
cyberprof
Posted
I took several 'alternative' tests from several labs, including Enterolab, before I knew I should have at least done the doctor's blood test first and maybe an endoscopy while I was still eating gluten. Every alternative test came back very positive for gluten intolerance, likely celiac and a host of other significant allergies and intolerances. Even the genetics were right on both sides. It looked like a sure thing to me.

So I enthusiastically did the diet for the last 2 1/2 years. My symptoms aren't primarily gastrointestinal and very little if anything has improved. It's difficult dealing with my doctor when we aren't on the same page. He can't get past my now negative blood tests so I can't get anyone to test me any further in the celiac direction. The food is costly, the lifestyle isolating and difficult and I have to have all my meds compounded because of all my allergies and pay for them myself, which is about 4X the cost of regular meds. But through all of this I have no official diagnosis, no advocate and the doctor and my family are rolling their eyes a lot. So my insurance is basically useless without a diagnostic consensus and I can't get any medical professional to do anything. I feel stupid.

Dr. Fine has failed to publish and my entire inconvenient, expensive lifestyle is based around his findings. My faith is wavering. I honestly still think he's right. But I sure can't figure out what he's doing and why he is so silent.

Has anybody in my position made any progress with the medical profession? Anybody have a peptalk up their sleeve? <_<

Gentleheart, I think you have several options:

1) Ignore/don't mention celiac in any doctor's presence, stay gluten free and find a doctor that will find out what else - if anything- is wrong with you. Being gluten-free isn't something your doctor or any doctor can "disallow" and doesn't preclude the doc from looking for other things and it doesn't impact the results of any non-celiac test.

2) Go back on gluten (risking any complications) for 2-3 months and then have the endoscopy. This MAY (or may not) get you a diagnosis and a reduction on some medical bills.

If you truly are gluten free (eliminating any Cross-contamination and hidden sources) and you don't feel better there may be something else (GI or autoimmune or hormonal) that is wrong. Perhaps get a new doc would help?

Going back on gluten could send your system into chaos, so that is the risk that you have to take. You may also still have a negative biopsy.

good luck!

~Laura

AliB Enthusiast
AliB
Posted

I would agree with Laura generally. In order to get a diagnosis you likely will need to introduce gluten again for a few months.

You didn't say if you were avoiding anything other than gluten, but it would seem likely, as your symptoms have not improved after so long that you may well be intolerant of other foods, not just gluten. You cannot assume that gluten is not a problem as any recovery may be masked by symptoms from other intolerances/allergic responses.

Following an elimination diet for a while might help to show up problems with other foods. When I dropped gluten, I also dropped dairy and most carbs and sugar. I knew I was somewhat lactose and sugar intolerant (both di-saccharides which are hard for the body to break down as we often lack the necessary enzymes due to gut damage) but it has really shown up - last night I licked a custard spoon and ended up coughing my guts up for the next 30 minutes!!!

Other than gluten intolerances commonly are things like dairy, soya, corn, eggs. People also become intolerant of other carbohydrates that they consume regularly if they have used them to replace the gluten-based carbs.

Is it worth just going back to basics for a while? Just stick to the simple stuff, plain unprocessed meat, fish, poultry, fresh fruit and veg and a little honey. You can gradually re-introduce added foods and watch for reactions.

It is a difficult one as even when you are eating the gluten-based foods, getting a diagnosis is still not straightforward. I had the blood test done before I went gluten-free but it still came back negative. I didn't see the point in getting the biopsy done as I needed to get off the stuff quickly - I was in too much pain to wait, and if the test was negative then even the biopsy may not have showed it up. My stomach settled very quickly, but everything else is taking somewhat longer to resolve. We have a different system here in the UK so don't have to rely on insurance, so obviously it is different for you.

moonlight Rookie
moonlight
Posted

Hi,

I was a care-giver for my husband for long time - we couldn't figure out what happened to him, the doctors were not much of a help for us too. But, I see with my own eyes, he is healthy now!! My husband now does not have pins and needles, floaters in his eyes, no GI/abdominal problems, no skin rushes, these are only some examples, there were so many things going on..now nothing, nothing, nothing...His immunie system is so strong. Eventhough there is a flu thing going on and allergy season started, he has no problem. I am serious. We didn't care what the doctors said, they believed or not. We kept him away from medications.

I just want to tell you this thinking that it might help you. We started with gluten free diet, but we slowly understood that when you go for gluten free diet, you dont necessarily eat healthy, you replace gluten with other bad things.. Can you tell me what you usually eat for dinner, breakfast, lunch and snacks?

I took several 'alternative' tests from several labs, including Enterolab, before I knew I should have at least done the doctor's blood test first and maybe an endoscopy while I was still eating gluten. Every alternative test came back very positive for gluten intolerance, likely celiac and a host of other significant allergies and intolerances. Even the genetics were right on both sides. It looked like a sure thing to me.

So I enthusiastically did the diet for the last 2 1/2 years. My symptoms aren't primarily gastrointestinal and very little if anything has improved. It's difficult dealing with my doctor when we aren't on the same page. He can't get past my now negative blood tests so I can't get anyone to test me any further in the celiac direction. The food is costly, the lifestyle isolating and difficult and I have to have all my meds compounded because of all my allergies and pay for them myself, which is about 4X the cost of regular meds. But through all of this I have no official diagnosis, no advocate and the doctor and my family are rolling their eyes a lot. So my insurance is basically useless without a diagnostic consensus and I can't get any medical professional to do anything. I feel stupid.

Dr. Fine has failed to publish and my entire inconvenient, expensive lifestyle is based around his findings. My faith is wavering. I honestly still think he's right. But I sure can't figure out what he's doing and why he is so silent.

Has anybody in my position made any progress with the medical profession? Anybody have a peptalk up their sleeve? <_<

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