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UCDSurvivor

Digestion Of Protein --may Be Bigger Deal Than Gluten

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As I stated in the previous note regarding my disorder. My problem is broader than just gluten. I found out that my body cannot assimilate protein very well at all. Here is a quote from Harvard Health Letter and then following are a list of all the symptoms and disorders/diseases associated with the problem of not assimilating protein properly. These are the known ones discussed by patients and doctors within our user groups and what is published. There could be more. It will show you how broad the issue is and how celiac intolerant persons are incorporated.

Article:

Urea Cycle Disorder

May 1, 2007

Digesting protein may be a hidden problem for some, according to the Harvard Health LetterBOSTON

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Thank you so much for posting this. I found the last paragraph to be very eyeopening. Perhaps it was the Versed that caused the horrible reaction I had on my last endo. It may also explain the reactions my son and I have had to the other two drugs that were mentioned. This is something we definately are going to look into.

With the ammonia levels in the blood, my doctors have tested this and the elevated number was attributed to my being a smoker. I am wondering if they may have been too quick to decide that was it. After all they all think I'm nuts anyway. This most likely does not apply to me but I am going to check it out. Maybe there is a reason why I have always limited myself to one or two bites of meat, I don't seem to digest much more than that. I have avoided heavy meat eating since childhood but am not a vegetarian. I wonder if low level protein routinely might skew the testing, should someone protein load before asking for a blood check?

Do you by any chance know what genes are related to this?

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I will obtain and post the challenge tests for you. They vary for the different disorders. But will provide for the most common OTC. Also will obtain genetic info for you. However, the most important part is doing the liver biopsy so that they know which enzyme you are missing -- that way they know what treatment and amino acid supplements you must have.

For example with OTC, I must take L-citrulline and L-Carnitine. In addition I use alternative medications COQ10, active B6, Calcium Magnesium soft gels, glucosimine/chondrotine, EFA, glathione/ATP injections. I also have a group of medications from the doctor for everyday and those that are for as needed.

I have never heard of smoking affecting the level of ammonia in body -- extrapolating it does affect the level of oxygen versus nitrogen. Nitrogen affects ammonia. Your life style could be masking another issue. I made mistake. Drug should be Topamax that increases ammonia not toporol. Will fix in post. Sorry, my brain does not work so well sometimes. If it was depakote that you and your son reacted to, that is a big flag that there may be metabolic issues.

I am not vegetarian. But living very close to that lifestyle sure helps. Go gluten free. Stay away from meats mostly because protein level is so high that I can't eat much any way. I can eat 30 grams of protein a day which is 10 grams per meal. We have to real a lot of labels and I use a recipe conversion software to help me.

It was the Versed during the endo that blew me away. Life was nightmares for three weeks. I was a psychotic nut job. The GI doc did not believe me. I googled but can't find website that had me laughing head off. Writer had some of same reactions I did and some much worse. He had grand mal seizures. Described his inability to do anything at the time. He made lemonade out of lemons through his website.

When I had liver biopsy, had to use special medication instead of versed.

Am off for a nap. Will provide info later today.

Hugs.

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Thank you so much for your info and time.

I had a horrible reaction from versed. Not only did it not sedate me until they had pumped a whole lot into me, every time I told the doctor what he was doing hurt he said give more versed. I also became combative as I finally going under. I had bruises from them holding me down. He didn't believe me when I told him I was awake until I told him almost word for word what he said and did during the procedure. The aftereffects mentally were much worse than gluten and lasted a lot longer. I don't remember much for the first week or so.

Although I hate the thought of more tests there is quite a bit that I have found that leads me to think I should look further. I wish I could get my hands on my twins liver biopsy report, but if wishes were horses......

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My reactions to versed remind me of a short story called the Yellow Wall paper. I would vasilate from total calm to total paranoia. Of course it did not help that my job was to interact with federal officers from the US Treasury. I would be smiling one minute, crying the next, and combative and angry the next. It took 3 weeks to go out of my system. As I said my GI said no one had reactions to Versed. Well she lied, just search the net and find many stories. Later after I had my true diagnosis I went back to her and verbally shredded her to tears. Her ignorance almost killed me and may have possibly put other lives in danger in the past or could in the future. She believed she was god and all knowing. When I showed her she was not, ha! She had told me that a high ammonia reading could have nothing to do with my liver. When it was totally with my liver.

As for the liver biopsies. To check for urea cycle disorders, the biopsy is very very special. The enzymes that the doctor is looking for in the tissues can "gas out" very quicky. So when my was done -- they did three punches (one was to double check for wilsons disease even though I kept telling the head of that department I did not have Wilsons, --self diagnosed.). When the biopsy was taken there was a doctor literally waiting to run it to the genetic lab. And when I say run I mean run. THe specimen has to be treated with liquid nitrogen and then examined. The process to find out if a patient has urea cycle disorders via a liver biopsy is not a regular process like other liver biopsies. I had three or four doctors in the little room with me. Yes I was afraid of having three punches. I had had a very bad experience about 10 years before with just one punch. But I had very special Doctor and team do the biopsies. They kept talking to me positively etc. So was not a negative experience.

Okay the confusing part about the OTC gene is that there are many mutations. In fact, they are thinking I may have a new type of mutation. But here is general info on the genes:

More than 200 mutations in the OTC gene have been identified. A mutated OTC gene may result in an ornithine transcarbamylase enzyme that is shorter than normal or the wrong shape, or may prevent the enzyme from being produced at all.

The shape of an enzyme affects its ability to control a chemical reaction. If the ornithine transcarbamylase enzyme is misshapen or missing, it cannot fulfill its role in the urea cycle. Excess nitrogen is not converted to urea for excretion, and ammonia accumulates in the body. Ammonia is toxic, especially to the nervous system, so this accumulation causes neurological problems and other signs and symptoms of ornithine transcarbamylase deficiency.

(NIH GOV)

What other names do people use for the OTC gene or gene products?

MGC129967

MGC129968

OCTD

ornithine carbamoyltransferase precursor

ornithine transcarbamylase

OTC_HUMAN

I have information from the genome project but will have to find it or will write one of the UCD research teams.

Here is more info on signs and tests:

elevated blood ammonia level (blood test that has very specific protocols, must spin and keep on ice. so if some one is to do, lab must know correct protocol. Texas Children's Hospital lab knows protocol.

abnormal pattern of blood and urine amino acids

Allopurinol urine challenge (24 hour collection)

abnormal level of orotic acid in blood or urine

Plasma ammonium ↑↑↑

Plasma glutamine ↑↑↑

Plasma alanine ↑↑↑

Plasma citrulline normal

Plasma arginine undetectable

Urine orotic acid ↑↑↑↑↑

Plasma ATP down

Deinitive diagnosis of OTC deficiency is made by laboratory tests, since physical synptoms are very general and common to a large number of disorders. A high level of ammonia in the blood is the hallmark of this disorder and other disorders that affect the urea cycle. In the short term, the levels of two amino acids in the urine (my test was negative for what ever reasons), orotate and citrulline, should distinguish between OTC deficiency and other urea cycle deficiencies. In OTC deficiency, citrulline levels are normal or low, and orotate levels are usually high. In the long term, however, the most definitive diagnosis can be made through DNA analysis, or through a test of OTC activity in a small piece of liver tissue (a biopsy) taken from the patient.

You can have false negative results but not false positive results.

My initial allopurinol challenge was negative. We were waiting on blood tests to return from Yale at the time. However, I was quite ill. We asked would it hurt to go ahead and treat me with the meds even though not confirmed. We did. Within 48 hours I was new person. But there are struggles over time.

Be very carefull about self diagnosis and cutting protein in diet until doctor confirms. If the body is not getting enough protein, it catabolizes on the muscles, including heart. That is the fine line we walk. I have to eat enough protein to avoid catabolizing but not too much where it kicks off the hyperammonia and other major problems. Children have even a more difficult time.

Hugs

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Hi,

I was wondering if you went to a GI doctor or to a geneticist. My GI doctor sent me to the blood tests you mentioned, but I am not sure if I should fast or not, or if I should I confused, I would really need some help.

Thank you!

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Hi,

I was wondering if you went to a GI doctor or to a geneticist. My GI doctor sent me to the blood tests you mentioned, but I am not sure if I should fast or not, or if I should I confused, I would really need some help.

Thank you!

Call your doctors office or the lab to ask about fasting. Or just fast after midnight and don't eat or drink anything in the morning to be on the safe side.

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oh, someone is still here on this thread after all these years.

Yes, I can call, but my doctor is not specialized in Urea cycle disorders. She said that, before sending me to a geneticist, she needs a proof.But she doesn't know a lot about these tests. For example, I found articles that suggest that ammonia should be tested after a protein meal. The amino acids tests should be tested after fasting. I am reading articles instead of having clear guidance here.

I was wondering if UCD Survivor can tell me if she was sent to the tests by a GI or by a genetics doctor. Or by the family doctor.

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oh, someone is still here on this thread after all these years.

Yes, I can call, but my doctor is not specialized in Urea cycle disorders. She said that, before sending me to a geneticist, she needs a proof.But she doesn't know a lot about these tests. For example, I found articles that suggest that ammonia should be tested after a protein meal. The amino acids tests should be tested after fasting. I am reading articles instead of having clear guidance here.

I was wondering if UCD Survivor can tell me if she was sent to the tests by a GI or by a genetics doctor. Or by the family doctor.

I don't know how often UCD survivor is on the board with this post being so long ago.

You could try doing a search using the name of the test and the word fasting and see what comes up. You may find something on a medical site that will tell you the fasting requirements. You could also fast tonight, since the test is tommorrow and then ask when you get to the lab. If they say no you need to protein load ask them how much and then go eat and come back.

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Happily it is not tomorrow, I will have time to ask the lab. I was just thinking that maybe I need a doctor who tells me clearly.

It is very thoughtful of you, thank you!

Your story of years and years of undiagnosed celiac disease sounds astonishing. I have a history of 20 years of migraines and only recently I've realized that it is from high protein foods. This time I will find the answer :)

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This is very interesting... I've been having very similar problems as with gluten after I ingest meat, any meat, for unknown reasons... I'm not going to jump to conclusions just yet with that, but I'm going to raise my awareness. Thanks for the information.

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Kareng, I am a bit concerned by your statement here.  I no longer have "out of control" DH, but smaller, more scattered, and more readily resolving (for the most part) flareups.  And it may be that I am just having what would be "normal" for a person in my situation, being 'only' 13 months into the gluten-free diet.  I will readily admit, and perhaps should stress, that the situation is very much better than it was before I went gluten-free, including the fact that my former GI symptoms have tot
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