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New Here - Not Sure What I've Got!
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I'm new here, and happy to be reading all the posts.  I'm in the midst of a personal storm, both physical and emotional.  I lost my son four months ago... and that should explain all my symptoms, especially the emotional.  Except, my symptoms look more like celiac or gluten intolerance.  I should mention that I am a Type 1 (insulin dependent) Diabetic.

 

Briefly: 5 years ago I underwent a rapid weigh loss, and severe depression.  I was given an endoscopy, blood tests for gluten... all were negative.  Yet, the ONLY thing that helped me climb out of that mess and eventually regain my health and normal weight were eliminating gluten and dairy. (and eggs).  At that time, a stool test through Genova/Metametrix did show off-the-chart sensitivity to gliadin.  So, regardless of what the testing showed, I really stuck with the gluten-free diet. 

 

I've been fine since then, except if I cheat much on the gluten... I can "feel" the old symptoms coming back. But since I didn't have "celiac", I never was 1000% gluten free.

 

Then in early January, I got a flu.  I was already emotionally distraught over my son.  And I do recall being more lax with avoiding gluten. (Went to several restaurants in Los Angeles on a trip, and wound up having a French Dip sandwich, some Chinese food with coated chicken, etc.)  Suddenly the weight loss and fatigue are back... 20 pounds in two months.  This time, huge abdominal issues, constant burping, constipation, nausea.  Everyone is alarmed... and the depression is also oppressive.

 

I just went back to a GI doc who did an MRI (looking for pancreatitis), and he also did the blood gluten testing, which was completely negative.  I do NOT have fat in my stools, so this apparently rules out most major problems (including gluten intolerance?)

 

The thing is, to prove that I am eating (and not simply depressed), I've kept a food journal.  I'm eating 2500 calories or more every day, including a ton of fat and oil.  WHERE does this food go, if not down the toilet, or digested onto my body?  I should be big as a house.  Any thoughts or advice would be SO appreciated!  I haven't been able to work or function now in a month.  Blessings~

 

 

 

 

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Hi and Welcome to the Forum -

 

First, I'm so sorry for your loss and for what you've been going through.  Your symptoms do sound like Celiac - but diagnosing Celiac or non-Celiac gluten intolerance can be tricky.  Especially with non-Celiac gluten intolerance because there's no test for it other than going gluten-free and feeling better and then reintroducing gluten and getting your symptoms back - and then going gluten-free again and having your symptoms go away again.  Not having fat in your stool is a good thing - but it certainly does not rule out Celiac or NCGI.

 

Did they run the full panel of Celiac tests?  Do you have the actual results?  Sometimes the numbers are borderline and they call it negative when it isn't.  Did they test for other nutrient levels?  Especially Vit D, iron, and Vit B.  If they already did the full panel of Celiac tests you can always eliminate gluten entirely and see what effect that has on your symptoms.

 

You can have negative tests and still have Celiac or NCGI.  It is also not uncommon for it to be triggered by a major life event... illness, pregnancy, loss, emotional trauma, etc.

 

Good luck!

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Hi... thanks for your response!  The GI doc ran three tests: 

 

1) Endomysial Antibody IgA - Negative

2) t-Transglutaminase (tTG) IgA  <2   (range 0-3 = negative)

3) Immunoglobulin A, Qn, Serum  130 (range 91-414)

 

Other than that, my MRI came back negative.  I am still belching, burping, and losing weight--and feeling weak and depressed. 

 

All I can do right now is follow the Celiac diet, and avoid other known allergens... and hope it works. 

 

Any other thoughts on this are much appreciated.

 

Lori

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Hi... thanks for your response!  The GI doc ran three tests: 

 

1) Endomysial Antibody IgA - Negative

2) t-Transglutaminase (tTG) IgA  <2   (range 0-3 = negative)

3) Immunoglobulin A, Qn, Serum  130 (range 91-414)

 

Other than that, my MRI came back negative.  I am still belching, burping, and losing weight--and feeling weak and depressed. 

 

All I can do right now is follow the Celiac diet, and avoid other known allergens... and hope it works. 

 

Any other thoughts on this are much appreciated.

 

Lori

Hi there Lori!

 

I'm sorry for everything you are going through. I wanted to talk to you because some of your unexplained symptoms really hit home for me. I seem to be having VERY similar unexplained issues. Maybe we can compare things and figure something out :)

 

I started losing a lot of weight about 6 months ago. I'm not losing anymore, but cannot gain anything. I've seen lots of doctors and had every bad cause ruled out. The weirdest thing that started for me about 6 months ago as well, was one day out of nowhere i had really bad nausea and BURPING/BELCHING. The nausea comes and goes, but I am burping on and off all day every single day. This is so strange for me and seems unexplainable. I burp on an empty stomach, but it is significantly worse with eating or drinking ANYTHING. I'm not kidding you...just drinking water makes me belch. I cannot understand it. My test (blood test and biopsy) was negative for actual Celiac.

 

I finally found a new doctor who suggested I may have a gluten intolerance. He did some blood work and found I have a gene that puts me "at risk" for "celiac permissive gluten intolerance" and he is suggesting we try a 3 month trial of being gluten free.

 

So...what is your burping like (I know that sounds stupid)...I'm just trying to see if we have any similar patterns? I never knew if that could be a symptom of a gluten issue. I told my doctor "if it's gluten I don't understand why water and non-gluten foods result in all of this instant gas/belching" and he said it could be that because of a gluten intolerance, ingesting ANYTHING into an irritated space can cause this. I'm still trying to understand.

 

Anyways, reply back when you get a chance and maybe we can compare notes.

 

Do you have any other symtpoms? I have muscle twitching, TONS of phlegm (or post nasal drip) and just a general overall feeling of weakness. And on and off nausea, and also increasingly blurry vision.

 

Talk to you soon I hope!

Dana

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Wow, Dana!  I hate to be joyful finding another person who is suffering... but how very nice to know someone out there has some similar symptoms!  Please feel free to email me at lrmilas@gmail.com, and we can exchange phone numbers if you like. 

 

I also have been belching/burping continuously, all day long... and never have done this before.  And I think other Celiac/Gluten Intolerant people might weigh in on this issue of whether this is common. 

 

I LIKE your doctor!  I think he may be right, if we have damaged our small intestines, they just won't function right. 

 

I know that, at least for now, I have to eliminate all foods that I am allergic or senstive to.  I have almost stopped the burping by eliminating dairy for the last 4 days.  I know eggs are history for now (for me).  And I'm going to be religious about gluten.  I have heard that this could take weeks or months to really repair the damage.  I am also taking prescription Creon (pancreatic enzymes) because a test showed that I am making almost no pancreatic enzymes. 

 

Here's some good news.  I had a similar situation occur for me about 5 years ago.  Had the endoscopy and colonoscopy, all the Celiac tests, etc... and they were all negative.  I never found out really what caused it (30 pound weight loss, exhaustion etc)... but I did eventually figure out to stop gluten, eggs, etc.  Eventually I put all the weight back on and got all my energy back.  This feels very similar.  The only thing is... I don't sit around eating loaves of bread now.  I'm thinking that just the small trespasses I've made over the last months might have added up to a relapse???  (I wish other GI people would tell us if this is possible.)

 

I'm so determined to figure this out that I am doing some unconventional testing on my own.  My iron levels just drop for no reason.  I cannot get my Vitamin D level above 30, even with daily tanning.  Other vitamin/nutrient levels (espcially oil based) are not absorbing.  I think this may have to do with the gluten and small intestines not able to absorb anymore. 

 

Let's put our heads together and figure it out!  How are you doing currently?  How long have you been gluten free (or are you yet?). 

 

One more thing... just a worrisome pet peeve of mine... the same "holistic" doctors who treat often go to Lyme.  I'm wondering how many others on this board have been sent down the Lyme road.  (I have.)

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Dana...

 

Sorry... I didn't read my original post, so I just realized I repeated myself alot.  I wanted to say "ditto" on the phlem and post nasal drip (suffering from that right now, in fact.)

 

I should add that my doctor emphasized getting my Vitamin D levels up much higher, and repopulating the gut with probiotics.  This hasn't worked out so well in the past... but I've noticed this week it's a little better. 

 

I have a feeling that if the problem is indeed gluten... no other therapy will work until the gluten issue is gone. 

 

Lori

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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