shad

Hi all 

So I have done a few tests done and I'm still unsure what I have. 

My initial stomach issues began 8 years ago. And the gastrointrologist kept saying IBS. 

I was used to stomach pain and being bloating specially if I  ate ambiguously. But things changed after last September after I dated a girl who apparently had an autoimmune disease but she said her autoimmunity is fibromyalgia!! 

I started having semi- diarrhea and lost around 5 to 10 lbs and hair started to fall. 

LAST MARCH:

1.

I did a serology test 

And my IgG came borderline high 

IGA antibody WAS NORMAL

And I was not IGA SERUM DEFICIENT.

2. ENDOSCOPY

and the doc said your Vili looks beautiful and no sign of h.poly. tho I asked for pictures and he said he didn't take any.

3. Did generic testing and it came back as dq2.5 and DQ7.  Not sure what it means, I wish I could post a picture of it here. I know dq2.5 is not good for celiac .

4. I don't feel much different when on gluten-free diet. However due to my strict first of rice and meat and no dairy , fruct... And not eating too much. Severe stomach pain is very rare. I did another IgG test and this time I came back in normal levels. I should also mention, I have had floating poop for a long time. Its almost impossible for me to gain weight. (Since I was young).

If I eat a lot or late at night I pretty much get a soft stool next morning. I have a very deserve  stomach and I think I don't absorb my food properly. I don't yet know about food intolerance but I am doing the endolab soon. 

I have lost an extra 10 to15 lbs since going on this diet for the past two months as I now have malnutrition. I used to eat alot before and I love food. I'm now depressed and confused and always scared to eat ?

2 hours ago, Ennis_TX said:

I have similar issues and have to eat blended, soft, easy to digest meals in the evening. Combination of not enough pancreatic enzymes to break down foods, and my stomach and gut having dumping issues in the evening. Helps to eat simple meals, soft meals, blended or cooked to swish able mush, like smoothies, and take digestive enzymes.

I took probiotics twice and almost instantly my stomach feels better. But I don't know if I want my  stomach to get used to probiotics on regular bases. What digestive enzymes do you take? 

1 hour ago, Nicholas W. said:

I had gluten blood test - nothing here.
However, I am going to do the full food profile to find if I have an intolerance for some of the food.
Please keep updating with your progress. Trying to figure out the best way as I don't have insurance and want to optimize my expenses.

May I ask what kind of gluten test you did? And did you find it helpful or accurate? 

And what kind of food intolerance test are you thinking of ?

As of right now I'm running out f ideas because I have cut so much food out of my diet where I'm loosing a couple lbs but my stomach still feels upset if I have a bigger meal in the evening. 

On 13/05/2018 at 11:20 AM, GFinDC said:

Hi Shad,

There is a medical test for lactose intolerance.  Seems like there is one other food intolerance test but I forget what it is now.  But basically, the best test is our own bodies' response.  People do elimination diets to determine what foods cause them problems.  Myself I have done several elimination diets over the years, as food intolerances can change over time.  The first one I did I ate nothing but apples with salt on them for a few days.  I had not been eating salt for 5 years at that point.  I quickly learned I had an iodine deficiency because I got an energy boost after eating the apples with iodized salt.  That surprised me but it shouldn't have as not eating salt means you have to get your iodine elsewhere. Duh!

A good elimination diet is to pick out 5 simple foods that you think will not cause digestion problems.  Safe foods.  An example might be chicken, oranges, rice, broccoli and peas.  Eat only those foods for a week or two.  If you are not reacting to those foods then you should start to feel better.  It can be a little boring I know.  Anyhow, if everything is improved and your digestion has settled down, try adding one new food every 3 days.  If things haven't improved, one of the first 5 foods may be a problem.

Remember, everything counts, including spices, drinks, sauces, etc.  Our bodies don't discriminate when it comes to picking out a food to target.  So we can develop an intolerance to any food.  But anecdotally I'd say it is usually foods we eat a lot of that cause problems. 

Thanks for the advice. Ill peform any test or diet that can pinpoint my stomach issue. I will run an alergy test ( I have never done one before) and I want to also try Open Original Shared Link. I'll also do a lactose intolerance test as you just suggested. 

I have been off of gluten and lactose for three weeks now and even tho my stomach rarely hurts , my stool still flows at times. But anytime I ate at home my stomach was never upset or in pain. The one thing that really made a difference was taking just one pill of probiotics 5 days ago almost instantly my stomach became quieter and the next day no floating stool ☺️

I spoke to a doctor online and she says she likes to put me back on gluten and test for gluten zoom (blood work). Has anyone heard of this test? 

My gastrointrogist said to try an FODMAP and see how that works.

It's just that I can not pinpoint it to anything, and specifically if ieat foods that are a mix of things my stomach usually hurts for example a buffet or eating a fish with lots of suaces on it. 

In the Mornings regardless of what I eat I'll be fine, lunch is usually fine as well, but third meal specially if a large meal will make my stomach noisy and gasy. Also an empty stomach is a very grumbling.

The same doctor who mentioned gluten zoom also said I should worry about parasites, this is something that I am probably prone to as I traveled a lot and pretty much are sushi eveywherr within the last 10 years. Not sure how to deal with this. I did a stool test and it came negative for parasites.

If anyone has any suggestions please share

16 minutes ago, GFinDC said:

Hi Shad,

We don't always get clear cut answers with celiac disease.  That's part of why celiac is so often mis-diagnosed as some other condition.  It can take years to get a celiac disease diagnosis.  Or sometimes it is very quick too.  But that is usually after years of a person having the condition and suffering from many symptoms.   Most people with celiac disease in the USA are not diagnosed today.

If you feel better not eating gluten there has to be a reason for that.  It could be celiac in the early stages, or it could be NCGS (non-celiac gluten sensitivity).  Either way the treatment is the same, avoid gluten in your diet.

I suggest you write down the symptoms you were having and how they made you feel.  Plus how things have improved sine going gluten-free.  Keep that as a reminder for later when you might begin to have doubts.  Sometimes it is helpful to do a food diary and record everything we eat and drink and the results.  Sometimes a pattern will emerge.

To start the gluten-free diet, please take a look at the newbie 101 thread in the coping with section.  It has some good tips.   Staying with whole foods (nuts. meats, veggies, fruits) and no dairy for a couple months is good.  No oats for a while either.

There are no tests for NCGS yet.  It may be related to FODMAPs in the diet though.

Appreciate your response. I understand it's a very misdiagnosed disease. I don't really think I feel any better being gluten free for almost 10 days now. And cutting off dairy doesn't feel great either, if anything I think the natural probiotics in some dairy might have been helping me. I do have a sensetive stomach tho , that's for sure and the GI gave me a FODMAP to try out. Is it possible that a specific food is causing my stomach to feel like this? Is there any good alergy test that can be performed for food intolerance? 

The main issue I have is upset stomach now and a super noisy and gasy stomach. Specifically when I eat the third meal of the day. Or if I eat at a buffet I always go to the bathroom right after which I think it shows I'm very sensetive to bacteria in the food.

My stomach sometimes heals and works well for months. but on the other hand I have softer stool or floating stool for months. I know fatty food does upset my stomach as well.

No matter what I will continue my gluten free diet for at least 6 months to see how that makes me feel.

Love this site. Lots of awsome members and info ?

14 minutes ago, squirmingitch said:

I don't know why you say your results were negative. The TtG IgG is absolutely positive.

None of it matters if you are going to go gluten free anyway.

 

I meant my endoscopy results came back negative

And my IgG levels are not absolutely positive, it's borderline positive. 

From what I understand and have been reading a low IGA serum and a high IgG level is more indicative of celiac. But my IGA serum is not low either. 

I will look into food alegies 

Does anyone know of a good lab in North America to test for alegies? 

Also my ttg IgG # is borderline high, should I be worried about that?

My IGA level is pretty normal tho

I got my results back and everything is negative.
Two weeks ago i was tested for celiac and the blood came back as 
IGA serum 3.5  range .69 to 3.82
DGA IGG SERUM 7. <10
DGA IGA 5 <10
TTG IGA 8 <20
TTG IGG. 25  < 20
      LESS THAN 20 NEGATIVE
      OVER 25 POSITIVE 
       20 TO 25 BORDERLINE

When I got my results above I immediately went gluten free, eating at home only. I was gluten free for around 10 days then I started to eat gluten again for 5 days prior to my endoscopy ( just one two slices of bread a day. 
The doctor who performed my endoscopy said my villi looks beautiful and no damage or inclination is present . 
The biopsy results came back as 
H pylori negative
And celiace negative

Notes of biopsy: 
No significant abnormalities
No antral type mucosa identified
Negative for intestinal metaplasia or dysplastic change 
Villous height is preserved, no active inflammation or parasites are seen

I have had a sensetive stomach for almost 8 years , not sure what kind of food causes it but I do get bad bloating and cramps all the time. Tho I don't recall once eating  a price of bread and feel sick after. It is usually food that is all mixed up for example If eat at a buffet I usually go to the bathroom right after within 45 min 
I'm a 35 year old male with a very active life style. How do those # s look like , I'm going off gluten regardless for now. 

Hey everyone

I'm still waiting for my biopsy results

I got a copy of my blood work tho and my ttg IgG is 25 and everything else seems to be in the normal range 

I can post a copy of it here 

I mean I may come back negative because I was gluten free for a week? 

On 22/04/2018 at 9:58 PM, apprehensiveengineer said:

This is something I wish that more people would consider. It's why it's so hard to get people tested who have less obvious symptoms. If you had asked me 4-5 years ago if I was in good health, I would have said yes without hesitation. I didn't seem to have any serious health problems, I was a high level athlete (how could I train/compete at a high level if I was not in optimal health?). Why would I think any different?

It took being gluten-free for a while for me to realize what being healthy actually felt like. For example, I didn't know what it was like to not have a stomach ache because I'd always had one. 20+ years of stomach ache! I had nothing to compare the feeling with. I only realized when my stomach stopped hurting that I'd never felt that good in my entire life. When it comes back due to accidental glutenings, I can't fathom how I functioned like this before.

Very true, I think I have taken steps to think that a upset stomach is normal , many times I would play soccer with discomfort or go on a date being extremely bloated but I thought it's normal for people with IBS!

I have been eating a little bit of gluten for the past couple days. I feel a lot more tired than a few days ago and one day I slept 12 hours! 

When I went gluten free for 8 days , I felt like my energy level went up, I felt better and even my sex drive sky rocketed. Not sure if that 8 days really made a difference or it's just psychological or both.

I read a lot online about this condition and the more I read the scarier it gets. I guess my social life will never be the same. I can't travel freely anymore :-(

It seems this a very serious condition, but what I don't understand is that most people with celiac are never diagnosed so how do they live their entire life not knowing with such severe consequences

Right now I really looking forward to going back to a gluten free diet, my endoscopy is on Friday.

Thanks everyone, I already feel better. I don't know if I have many symptoms or it's just that I'm not aware of them. I will eat more gluten for the next couple days , I was gluten free for only 8 days anyways, before that I used to eat at least 8 slices of bread a day. 

The main symptom that I have is my hair is falling out in bunches, but that could be due to male pattern baldness too I guess. It is falling a lot more in topthan the back. My stomach is usually fine too, it's only when I ate some specific foods like specific fruits or some dairy that ( milk rarely made my stomach upset) or some juices. But I did find it that I do have a very sensitive stomach compared to 10 years ago. I should also say I pretty much never vomit or never really feel nauseous  except if I get food poisoning . My stool is usually never hard tho , yet I don't get diarrhea neither. And if i get diarrhea it's one time and that's it. No rushing back to the bathroom. 

My family doc says my iron and b13 levels came back normal too, I'm taking some gluten free supplements since last week.

I really appreciate the help. I'll definitely do the endoscopy and get back to you with results next week 

I just ate a bite or two of bread this morning. is that good enough for my test which is in 5 days? should I eat more gluten? 

my understanding (from what I have been reading) is that the blood test is pretty accurate if it comes positive tho.  it's less accurate if it is negative. 

is the endoscopy for biopsy or checking for damages or both? will it take a long time for Villi to heal back? 

I just joined this message board, there is a lot to read about celiac but i am very scared and there are so many unknowns. 

I am 35 and I have been experiencing stomach issues for the past 8 years. I have gone to a gastrointrologist a couple times, and every time i was sent home saying i have IBS! he did mention you can go on different diets to see how you feel but I never followed thru with it.  stomach Issues would come and go, for example my stomach would work great for a period of 4 months and then if i get food poisoning or something else goes wrong, it would be bad for the next 5 to 6 months. last summer I expericened weight loss and hair loss, and I eat a lot and i have been a very high energy person. I went to the doctor again and a Dermatologist, and he says the hair loss is due to recent stress. i didnt think of it too much and life went on. I should say that I travel a lot, around 6 months a year.  i felt really tired at times within the past 6 months tho, I would never fall asleep early but I have been sleeping early for the past few months. I noticed my hair is falling out more than before. This time when i got back home two weeks ago, i went to the doctor to do a physical. he tested me for everything including HIV, H C, ... iron defecency and list goes on, everything came back as ok. I told the doctor that I feel like no matter how much i eat the food is not being absorbed. He said, Let me just check you for Celiac too. 4 days a later the test comes back Positive. Now it's been 8 days since I got diagnosed. I have been Gluten Free since 8 days ago, but they want to do a Biopsy next Friday which is in 6 days, do i need to do the Biopsy? is the blood test not 100% accurate if it comes back as positive?  and if i am going to do the test next Friday, I should be eating normal again with lots of Gluten? 

I really scared and confused. I would hate to have a tube down my throat if it's not necessary.