Back From Columbia University Hospital

[Simona19]

Posted Today, 02:15 PM

Hi Everybody!

I would like to tell you about my visit to the Columbia University Hospital in New York. I didn't see Dr. Green because I would have to wait for the appointment 7 months. It was to long for me. I saw Dr. Christina Tennyson. My medical history is very complicated, and she would check it with Dr. Green which makes me very happy.

Who read my posts knows that I have some unresolved issues still.

Dr. Tennyson told me that my biopsy Marsh1 can be related to other illnesses, not just to celiac disease. She ordered more blood work: vitamin A, E, B1, B6, Copper, Zinc, Folate, Vitamin 025(I don't know what that is) and Parathyroid hormone. Then she ordered one more time antibodies for the celiac disease because she didn't see all of them in my records. They are: Anti-Endomysial AB, Total immunoglobulins, Tissue Transglutaminase AB IgA and Deami... Gliadin IgG/IgA.

I told her that I'm gluten free from 06/2010 and casein free from 07/15/2010. I asked her, if my results would show something. She told me that even after half a year on gluten free you be able to see some elevations.

She also ordered a bone density scan, and she would test me for bacterial overgrowth- SIBO because that can mimic the celiac disease. You can have celiac and SIBO too. I look on the internet for symptoms of SIBO, and they are similar to mine: gas after fruits or sugar (I'm not eating sugar because of the pain on the left side of my stomach), diarrhea(it stopped after going gluten and casein free), abdominal pain (I don't have on gluten-free an CF diet, only under ribs on the left side after eating something with sugar or fat). Some patient have chronic constipation rather than diarrhea (After going Gluten and Casein free my stool was much harder. I was eating plums like craizy). With SIBO you will loose vitamins and minerals like with celiac disease. You can have SIBO for many years which can cause:

1. malabsorption of sugars and carbohydrates (gas), Lactose intolerance which I have, malabsorption of other sugars (sucrose, sorbitol- pears, fructose), diseases of the pancreas and inadequate amounts of pancreatic enzymes which can prevent you to digest fat(I have that, I'm taking pancreatic enzymes Creon), and you can have vitamin deficiencies like magnesium because they need fat to be absorbed in to our bodies (I have 1.7 and range is 1.8-2.4) diseases of the lining of the small intestine like celiac disease (which I might have).

2. Rapid intestinal transit (I have that - mine is under 15 minutes and in normal people it should be between 2-4 hours)because of this you can be Iron deficient (I have 35 from the range 35-100 - border line)

3. Weight lost (I lost 33 pounds in 4 months)

4. fatigue and muscle pain (I have that too).

5. Poor appetite (I have it and it's strange because on gluten free you should be very hungry)

Doctor also wants to see my son's blood results for the celiac disease- they came back positive. She would take them in to consideration when she will give me the final diagnose.

P.S. I posted the same thing in other post, but then I realized that it's older and not everybody would know about my journey to New York.

[WheatChef]

Last I read paper I read on that subject, altered small intestine bacterial populations are almost guaranteed, statistically speaking, in celiacs. At least that doesn't sound like a stopping point for your doctor.

[CDFAMILY]

Thanks for mentioning your tests as it is good to know what the Great doctors at Columbia are testing for.

The Vitamin O25 is probabably your vitamin D3 test Vitamin 25(OH)D which is an important test that so many are deficient in and so easy to fix with a supplement.

Let us know your tests results and how you are doing.

[Simona19]

Thanks for mentioning your tests as it is good to know what the Great doctors at Columbia are testing for.

The Vitamin O25 is probabably your vitamin D3 test Vitamin 25(OH)D which is an important test that so many are deficient in and so easy to fix with a supplement.

Let us know your tests results and how you are doing.

Hi!

You are right. The Vitamin O25 is Vitamin D25. I had that tested on August 10. It was just borderline, but doctor ordered another blood work for it. She just wanted to see how is it now.

Other doctors had tested this:

iron 35 (35-100) - referance range

TIBC normal

Iron saturation 10 (11-46)

magnesium 1.7 (1.8-2.4)

Protime, INR, PTT, FERITIN, Erlichia, Aldolase serum, Renin activity,Vitamin B12, cortisol total serum, folate, lyme disease was normal.

VitD, 25-OH, total 31 (30-100)

Vit D, 25-OH, D3 31

Vit D, 25-OH, D2 <4.

They also tested for other things, and ran two emergency pannels at the Emergency room. Some results came back slightly elevated. It wasn't very bad.

On Wensday I will go for my SIBO test to New York, and I will also see my doctor.

I will keep you posted.

[CDFAMILY]

I have not had an SIBO test what do they do? Is it a breath test?

[Simona19]

I have not had an SIBO test what do they do? Is it a breath test?

Yes, it is.

A day before You can eat only rice cake, small portion of rice, potato, egg white, chicken, fish or meat. You may have banana, apple, applesause, tea or coffe with milk. You can't eat any beans, green leafy vegetables, pasta, sugary sauces, bran, ice cream, or pudding.

After 9 pm you can't eat or drink.

The morning of the test you can't even brush your teeth and eat for about 6 hours. The test is 4 hours long. They will give you to drink something and then every 20 minutes mesure what you will breath out. Fun, ha?

If you have the bacteria overgrowth, you will have two times very big elevation in your breathing sample. Your intestines would have trouble with digestine it.

[CDFAMILY]

Interesting, and then if positive do they give you nutritional advice or drugs?

[Simona19]

Interesting, and then if positive do they give you nutritional advice or drugs?

I think you need to take some combination of antibiotics for it. Maybe probiotics later? I don't know for sure.

[sahm-i-am]

I just had the SIBO breath test done today and I'm awaiting results eagerly. I'm so ready to feel better. I keep getting worse and worse on Gluten Free diet. Let us know what happens.

[Simona19]

I just had the SIBO breath test done today and I'm awaiting results eagerly. I'm so ready to feel better. I keep getting worse and worse on Gluten Free diet. Let us know what happens.

Hi! I'm back. I had my test done today and the result is positive. Now I have prescription for two antibiotics. I will take them for two weeks. After them I should be better.

I also have to do the genetic test from a cheek swab- different than blood work just for DQ2 and DQ8. If the result will be positive, I definitely have the celiac disease. If not, then I don't have it. My son need to have an upper endoscopy because he tested positive in regular and genetic celiac panel.

I also need to retest my skin test for the wheat allergy. For now I still don't know, if I have celiac or not, but I'm very close to find out. Thank God!

[ravenwoodglass]

I also have to do the genetic test from a cheek swab- different than blood work just for DQ2 and DQ8. If the result will be positive, I definitely have the celiac disease. If not, then I don't have it.

Please don't rely on the genetic tests as a for sure that you do or don't have celiac. They are discovering more and more genes associated with celiac every day. It used to be thought only the two DQ2 or 8 were associated, then there were nine of them and recent research is showing as much as 27. While genetic testing can be part of the diagnostic process it is not the be all and end all that some doctors feel it is.

[Simona19]

Please don't rely on the genetic tests as a for sure that you do or don't have celiac. They are discovering more and more genes associated with celiac every day. It used to be thought only the two DQ2 or 8 were associated, then there were nine of them and recent research is showing as much as 27. While genetic testing can be part of the diagnostic process it is not the be all and end all that some doctors feel it is.

The think is that I got of the gluten before I had my blood work done. I tested negative. In the genetic test for celiac I tested negative for DQ2 and DQ8. My son tested positive in both tests.

After going gluten free I didn't experienced the big D yet. Many doctors told me that I have IBS. Why I don't have IBS for 4 months now?

As you know I had many issues and some of them had diseppeared.

Today I found out that I also have SIBO. If this will be cleared, I should be ok with few unresolved issues ( not related to digestive track). I hope. I feel much better. For the past two weeks I had only one very bad day.

The doctor is taking into consideration the fact that I'm feeling much better on gluten free diet. For now I need to clear the SIBO, wait for the genetic test (I know that isn't diagnostic)to clear the possibility of ever having or not having the celiac disease.

I tested positive on the skin test for the wheat which mean that I can't eat weat anyway, but I would like to know, if I have celiac too.

[ravenwoodglass]

For now I need to clear the SIBO, wait for the genetic test (I know that isn't diagnostic)to clear the possibility of ever having or not having the celiac disease.

Hopefully clearing the SIBO will help you. My fears with the genetic test is that they can't always tell you if there is or isn't a possibility of your having or developing celiac disease. I have good reason for this fear. My DD was both biopsy and blood positive for celiac. After she had been gluten free for a few years she had genetic testing done. She was told the celiac diagnosis was wrong and that she never could be or had been celiac. She didn't have the genes for it. She is off the diet and attributes all symptoms now to stress. That is what prompted me to get my genes tested. Research on my part showed me that although my gene is a rare one and not considered a celiac associated gene here in the US it is a recognized celiac associated gene in other countries. Gene testing is in it's infancy and it can't be relied on to tell you if you have or if you will ever develop celiac. There is just so much we don't know about it yet. I am glad the diet is helping you and hopefully when the SIBO is taken care of the last of your issues will resolve. If the diet is effective please stay on it no matter what the gene test results show.

[Simona19]

Hopefully clearing the SIBO will help you. My fears with the genetic test is that they can't always tell you if there is or isn't a possibility of your having or developing celiac disease. I have good reason for this fear. My DD was both biopsy and blood positive for celiac. After she had been gluten free for a few years she had genetic testing done. She was told the celiac diagnosis was wrong and that she never could be or had been celiac. She didn't have the genes for it. She is off the diet and attributes all symptoms now to stress. That is what prompted me to get my genes tested. Research on my part showed me that although my gene is a rare one and not considered a celiac associated gene here in the US it is a recognized celiac associated gene in other countries. Gene testing is in it's infancy and it can't be relied on to tell you if you have or if you will ever develop celiac. There is just so much we don't know about it yet. I am glad the diet is helping you and hopefully when the SIBO is taken care of the last of your issues will resolve. If the diet is effective please stay on it no matter what the gene test results show.

Thank you for your replies.

I was thinking about staying on gluten free diet even if the results would by negative, or confusing. The reason: I'm finaly loosing weight!!!!!! My thyroid levels are normal again. No diarrhea!!!!! Fatigue had improved 80% and more and more ....

I also got over the part "Why me?" and "What again? Another illness to add to my list."