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beachbirdie

Member Since 16 Apr 2011
Offline Last Active Apr 20 2013 04:56 PM
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#717726 How Many Have Dh, Really?

Posted by beachbirdie on 20 July 2011 - 09:53 PM

I'm reasonably certain that my son has had DH, but he never went to the doctor for a diagnosis. When he would mention it to the Army docs, they just told him he had eczema and gave him creams that didn't help.

He had what seemed like poison oak all over his hands, itchy and awful. When my daughter was experimenting to find out why she was having so much abdominal pain and diarrhea after eating certain meals, we ran across a suggestion that this type of rash could be gluten related.

It wasn't classic, it was just on his hands. But after a 3-month gluten-free trial, his hands were clear for the first time in 15 years (not to mention that he had no more migraines or abdominal pain). He has been gluten free since. Well, until a couple of weeks ago when he decided to eat some gluten containing food that his wife could no longer eat, he didn't want it to go to waste. He was so sick, and realizes he must stay gluten free. Makes us certain the rash WAS DH, even without official diagnosis, not dishydrotic eczema which has also been suggested.
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#717412 Any Thoughts On What I Should Expect?

Posted by beachbirdie on 19 July 2011 - 11:39 AM

I have to agree with Skylark. After reading that matrix I had to just kind of shake my head. My doctors thinking along the lines of that formula almost killed me.


The more I've been thinking about this, the more I realize just how true it is that "formula-based" thinking leaves a lot of people very sick. There is a similar matrix for the diagnosis of thyroid disease, and I didn't fit into it at all. I was awfully darned sick and facing a lifetime of several terrible medications before I met the doc who helped me.

Doctors just don't seem to think any more. It's almost as if we'd get just as effective help by calling a med-help call center in India. Doctors today just go down a checklist, and run through a script, trying to jam every patient onto the "90% probability" category. They ask themselves "What do 90% of people have?" and that's what they diagnose. It's no wonder people are forced to spend so much time and money to get well...every time you go back and report "well,THAT didn't work..." they just move down to the next thing on their list.

Ack.

The docs and nurses on one of my favorite medical blogs make fun of Dr. McInternet, but for some of us, it's the only way we got real help.
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#717127 Docs Don't Agree, Waiting For Results

Posted by beachbirdie on 18 July 2011 - 09:47 AM

My father had bleeding, digestive problems and osteoarthritis. They never did determine why so I wonder if he had the same thing? I wonder how prevalent these problems are in my family - no one talked/talks about digestive problems. That's probably an Irish things too.....

My GI game me some pro-biotics to take. Would the bacterial overgrowth show on CBC blood work? CBC & thyroid were normal. My primary said to use low fiber until my problems clear a bit and introduce foods gradually as I can tolerate them. The GI said that's fine for now. The surgeon said high fiber. What is and where do you get a plain cellulose fiber?

I took myself off dairy a long time ago and just started with yogurt. As a consequence my Vitamin D levels were way low & I have to supplement - which my primary said not to now until the bleeding stops. I rarely have sugar but my GI said artificial sweeteners will bloat and give me gas. He'd rather me have real sugar.


My surgeon is an idiot not a GI.


Your GI sounds like a doll! Does the probiotic supplement include Saccharomyces boulardii? That one is supposed to be very good for intestinal issues that have caused inflammation.

Your Vitamin D issue may not be a result of going off dairy. It is very common to be deficient in Vit D when you have celiac or other issues that cause malabsorption from the intestine.

Bacterial overgrowth won't show up in regular bloodwork. The only thing you might see that's off is a higher than usual white cell count. They have to do specific tests for bacteria.

I got my cellulose from (Company Name Removed - They Spammed This Forum and are Banned), you might find it in a nutrition store as well, it is more expensive than citrucel or metamucil-type fiber supplements. If you don't mind the gelatinous goo, metamucil is very effective! Just make sure you find out from your GI doc if he prefers you to use soluble or insoluble fiber. I also liked Heather's acacia fiber from helpforibs.com if you need soluble rather than insoluble. You can also find acacia fiber (provided you're not allergic to it) at some drug stores.
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#717116 Any Thoughts On What I Should Expect?

Posted by beachbirdie on 18 July 2011 - 08:51 AM

Yes, I discovered through reading that it could affect any part of your body. However, I hesitated to take him to a gi doctor without gi symptoms.

Currently he struggles with the following: ADD, not being able to concentrate, trouble sleeping, chronic stuffed nose, throat clearing, discharge from eyes. We have tried a variety of shampoos including prescription for seb derm for the last 4 years with no improvement. (It cleared up completely on a 6 week gluten-free trial) He has severe acne and allergies.
in the past he has struggled in asthma, eczema, stomach ulcer, and nosebleeds.



I see! How old is your son?

The next doctor will probably do more testing. Maybe more complete blood testing, possibly including the genetic test, and maybe recommend the biopsy.

You do have a somewhat clear answer just in the observation that a gluten-free diet sent those symptoms packing! Regardless of what the tests turn up, if it were me, I'd go with the gluten-free diet no matter what. Wish I could go back in time and do that for my son.

When my son was very young, he had a terrible time with eczema, also had a lot of nosebleeds. His pediatrician said he was sensitive to water and recommended a waterless skin cleaner for him! Arrgghh. And gave us cortisone cream to slather on his skin.

If I'd known back when he was little what I know now, we'd have been a gluten free family. I am sure his spine problems are a result of malabsorption of nutrients, apparently his kyphosis could be a result of Vitamin D deficiency. Our ignorance has sentenced him to a lifetime of pain.

My son is 30 now, and throughout his teen years and his twenties he had a red, blistery rash all over his hands that looked like poison oak. I didn't have a clue, other than I had the same thing though not as severe. Last year, when my daughter found out that bread and pasta gave her a lot of stomach trouble, everyone decided to try eating gluten free. My son has clear skin for the first time in his life! And no migraines, no nosebleeds. He is never going back on gluten foods. He ate some a couple of weeks ago because his wife had some stuff in the house she couldn't eat because of a medical problem, he didn't want to let it go to waste. He got so sick!

Wishing you the best for your son!

Regardless,
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#717107 Docs Don't Agree, Waiting For Results

Posted by beachbirdie on 18 July 2011 - 08:17 AM

Celiac sure fits, but the GI & surgeon don't agree & my primary suggested something else entirely. I'm waiting for the gene test results.

Have had most if not all symptoms nearly all my life. Tested for nearly everything and to the point I felt like a hypochondriac since I had strong symptoms of other things but no positive test results. Docs just didn't know why.

I asked him about the diarrhea, discomfort and bloating (I look like 4 mos. prego). GI looked at the digestive problems I've had, std blood tests (only some liver #'s were high) and asked if I was Irish. Caught me off guard which I don't like to experience with docs, but yes I am 2nd generation Irish. He pointed his finger at me, seemed self-satisfied and said "that explains it, you have Celiac disease, I'm sure of it" and ordered the gene test (which isn't back yet).


Oh, and surgeon said take Benefiber and after I asked if it was wheat based - replied very s-l-o-w-l-y, a syllable at a time, that Celiac was gluten enteropathy, Benefiber was fiber, don't worry about that and see you in 2 weeks.

Arg.


Your GI doc sounds like he is on top of things. The question about Irish? Spot on! High incidence of celiac in northern European types!

Your surgeon doesn't know anything if he thinks he can dismiss the celiac possibility without seeing a biopsy.

They should test you for bacterial overgrowth...maybe a C.diff infection (Clostridium Difficile).

Benefiber is fiber all right. Derived from wheat. Avoid it like the plague. Find yourself a good cellulose fiber. From the company website FAQ about Benefiber:

# Does wheat dextrin contain gluten?
Benefiber Powder, which contains less than 20 ppm of gluten and is therefore considered "gluten-free," based on both the FDA and the Codex Alimentarius Commission's proposed definition of less than 20 ppm. However, people who experience gluten intolerance should not consume any products, including Benefiber, that contain any level of gluten unless otherwise directed by their doctor.


If you have diverticulosis, you really need to stay on top of the fiber. I use a plain cellulose fiber. If you do have bacterial issues, the person who created the specific carbohydrate diet (Elaine Gottschall) says you should not use inulin fiber, which many supplements are.

You might gain some comfort by avoiding sugars and refined carbohydrates, something like the GAPS or Specific Carbohydrate diets.
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#712364 Scientific Validation For Non-Celiac Gluten Sensitivity!

Posted by beachbirdie on 27 June 2011 - 01:05 PM

No money in it for big pharma means research WILL be difficult to fund. When I think back ten years ago to the time I was so sick I could not function, it was a nightmare getting anyone to take me and my thyroid symptoms seriously.My labs, after all, were "normal". No one bothered to look at my thyroid antibodies because my hormone levels were "fine".

Thankfully a person can discover for themselves whether gluten is a problem by simply avoiding it. You don't need a doc to do tests or write a prescription.

I tell everyone I know who has intestinal problems and docs that brush them off, that they should try taking gluten out of their diet.
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