Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Back From Columbia University Hospital

Simona19

Recommended Posts

Simona19 Collaborator
Simona19
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


WheatChef Apprentice
WheatChef
Posted

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.

  • 2 weeks later...
CDFAMILY Rookie
CDFAMILY
Posted

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 Collaborator
Simona19
Posted
  • Author

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 Rookie
CDFAMILY
Posted

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

Simona19 Collaborator
Simona19
Posted
  • Author

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? :blink:

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 Rookie
CDFAMILY
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Simona19 Collaborator
Simona19
Posted
  • Author

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 Apprentice
sahm-i-am
Posted

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 Collaborator
Simona19
Posted
  • Author

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 Mentor
ravenwoodglass
Posted

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 Collaborator
Simona19
Posted
  • Author

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 Mentor
ravenwoodglass
Posted

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 Collaborator
Simona19
Posted
  • Author

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."

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,921
    • Most Online (within 30 mins)
      7,748
    Rusty49
    Newest Member
    Rusty49
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • cristiana
      Newly diagnosed mam to coeliac 11 year old

      By cristiana · Posted

      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 
    • trents
      Newly diagnosed mam to coeliac 11 year old

      By trents · Posted

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Newly diagnosed mam to coeliac 11 year old

      By Dizzyma · Posted

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
    • Florence Lillian
      gluten free cookie recipes

      By Florence Lillian · Posted

      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.