Preparations For My Visit At The Columbia Presbyterian Celiac Center

[Simona19]

Hi!

I'm just prepering myself for a visit at the Celiac center in New York tomorow.

I made myself list of the symptomps that I have, or had. The list is very long Wow!!!!!!

It isn't funn to live with so many symptoms of the celiac disease + other things.

Here are my

Symptoms:

*Abdominal cramping/ bloating/ pain.

*Diarrhea

*Constipation after diarrhea

Energy loss

Fatigue

*Gas

Gluten Ataxia ?????

*Mouth sores

Muscle cramping ( specially in the hands and legs)

Night blindness

*Stool foul smelling, light tan or gray-colored

Weakness

Irritable

*Mood changes

Iron deficiency ???? border line

Hypothyroidism - elevated hormones

*Obesity, weight gain- unexplained

Higher cholesterol- I don't need to take pills yet. It was higher in March. I had it checked today one more time.

Vitamin D deficiency

Low magnesium - border line

Weight loss

Easy brusing

*Aphthous Ulcers

Lactose intolerance

Delayed Gastric emptying ( early fullness after eating) ????

GERD - acid reflux disease

Non- alcoholic fatty liver??? I had it, but I don't know, if I still have it.

Pancreatic insufficiency ????

Allergic Rhinitis

Asthma

Food allergies Nuts, Kiwi, honey, orange aroma-peals (asthma, anaphylactic sock), cantaloupe, pineapple, banana, mint.

Hair lost, balding

Eczema

Dermatitis Herpetiformis????

Nails, dry and brittle that chip, break easily

Nails with horizontal or vertical ridges

*Nails with white spots - I had that as a child.

Muscle pain, weakness, tingling

Muscle spasm and cramps

Migraine

Peripheral Neuropathy ?????

Kidney stone

Premenstrual syndrome - they got much better on gluten free diet

Painful menstrual periods

* It diminished on gluten and casein free diet (just some gas after eating corn, beans, apples or pears, but it is not so bad)

Questions to ask:

Pancreatic Insufficiency ???: Fecal fat +1 after eating salmon and butter in mashed potatoes day before, only one sample.

Chronic Pancreatitis ????

Rapid Gastric emptying (dumping syndrome): Palpitations, bloating, dizziness, tiredness, poor appetite, stomach spasms, weakness, weight loss, dizziness, sleepiness, extreme fatigue. ????

Early dumping - systemic : Desire to lie down, palpitations, fatigue, faintness, headache over night,

Almost fainting, syncope, desire to lie or sit down, weakness, exhaustion, sleepiness, drowsiness, falling asleep, dizziness, fullness in the abdomen. ????

Gluten Ataxia - concentration problems, “brain fog”, headaches, neuropathy - “bug crawling” sensations and strange muscle twitches + new white lesion on my brain ????

Fatty liver - allergies, Total protein elevated: liver dysfunction??, The globulin level was elevated - chronic infection, autoimmunity diseases???

Low AG ratio - liver dysfunction ????

Forum:

HLA - DQB1*0502 and HLA - DQA1*01 = DQ5

HLA - DQB1*0301 and HLA - DQA1*05 = DQ7 ???????

HLA - DQA1*05 is a half of the DQ2 !!!!!

Pre - syncope??? Same symptoms as early dumping syndrom.

Much better gluten free, but still some issues!!!!

I hope that they will be able to help me with my issues. I would like to be normal again.

[verushka1974]

I was there last year to see Dr. Green. All your symptoms sound so familiar to me, those were always and still are some of my complaints. Just curious, how long have you been on a gluten-free diet and what symptoms are you still having? Hope everything goes well with your visit. keep us posted.

[Simona19]

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. I look on the internet for the 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 result

s for the celiac disease- they came back positive. She would take them in to consideration when she will give me the final diagnose.

I just got back from the hospital. They took 9 tubs of blood from me.

I would finally be able to tell people what is wrong with me.

[Simona19]

I was there last year to see Dr. Green. All your symptoms sound so familiar to me, those were always and still are some of my complaints. Just curious, how long have you been on a gluten-free diet and what symptoms are you still having? Hope everything goes well with your visit. keep us posted.

After I got gluten free, end of May 2010 and completly casein free after July 15 (I drank lactaid milk like ones per two weeks) I didn't have any diarrhea yet. I had bloathing and gas after some tests and I still have gas when I will eat something like brocoli, apples, beans, pears...., but no more cramps or pain in my abdomen.

Before I went gluten free I had: enargy lost, fatigue, mouthsours, night blindness, smelly stool, weakness, irritable, elevated hormones for hypothyroidism, obesity, high cholesterol, easy brusing, elevated pain sensitivity ( when I hurt myself, I do feel the pain more then others. Sometimes I even fainted because I couldn't stand it which is very strange).

, lactose intolerance, fatty liver, acid reflux, allergic rhinitis, migranes from 13 years of age, astma, food allergies, hair lost, eczema, dry nails with horizontal ridges, kidney stone, primenstrual symptoms and very painfull mens. periods- 32-34 days apart.

I have: ocasional bloathing, fatigue, energy lost, ocasional gas after fruits and vegetables, muscle cramping, tingling, pain in my legs and hands, night blindness, weakness, iron, magnesium, vitamin D deficiency (I think that I had that before, but nobody checked for it), obesity, lactose intolerance and mil allergy, acid reflux, pncreatic enzymes insuficiency, allergic rhinitis, astma, food allergies, hair lost, eczema, dry nails, migraine (I got issue with my brain), kidney stone, rapid transit in small intestines.

I don't have: abdominal cramping, diarrhea, smelly stool, mouth souts, elevated hormones for hypothyroidism, I lost 33 pounds, no high cholesterol, no fatty liver, premenstrual symptoms and the painfull mens. periods (instead of one week is just 4-5 days and the pain I have only on the second-third day). I still have the weakness and fatigue, but it is less than before. The vitamines that I'm taking are helping me a lot with this issue. I also have the syncope (when I will squad and stand up, I don't see nothing for 10-20 seconds)and dizzines less often.