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

Desperate For Help

Pink Angel

Recommended Posts

Pink Angel Newbie
Pink Angel
Posted

I am brand new to this forum and am afraid I'm going to ask something g that's been asked before, but...I'm desperate!!

I have had severe GI issues for years (constipation and nausea) I've been told it's severe IBS, which has been frustrating since nothing much can be done for IBS. In July 2008, I became so impacted that I had to have half of my colon removed. I drank 2 doses (2 gallons) of GoLYTELY and produced nothing.

Following the surgery, I was still in severe pain and was kept on a dilaudid drip through PICCADILLY line for 2 months. That caused complete Gastroparesis. Which led to detoxing from Dilaudid. Which led to other complications...argh. It turned out I had a horrible bacterial overgrowth in my small intestine.

Fast forward a year...the constipation returned with a vengeance. I was achy and fatigued all the time, to the point I was missing work. I developed a rash on my back and legs. I developed Raynaud's and mouth ulcers. I had to use an enema i order to have a BM. Things were getting really bad.

I was tested for celiac and blood tests came back negative, so I dismissed it. BUT...when my GI started talking about putting a pace maker into my gut, I got desperate and began a gluten-free diet. Two days later, the fatigue was greatly improved. Five days later, I had a BM without an enema. And then I had two the next day. I've had 2-3 a day since then. My stomach, it turns out, wasn't fat. It's flat, unlike it's distended state prior to gluten-free.

So...is it possible to have Celiac and have a negative blood test? I remember my doctor saying "there are two tests. I'm going to do the better one on you." I've had lots of colonoscopies but never an endoscopy. HELP!

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

Celiac.com Sponsor (A8-M):


mommida Enthusiast
mommida
Posted

I do think it is possible to have had a false negative Celiac test.

It is also possible that gluten can "trigger" other disorders. (Eosinophilic disorders for an example.)

Keep a food journal since many sensitive people have more than one allergen to avoid.

Stormy Rookie
Stormy
Posted

I saw in another post someone had mentioned that a fair amount of blood tests come back falsely negative. If going gluten free is helping, I'd say stick with it. The more research I do, the more I find that Celiac Disease can be doing to your body without realizing it. It's kinda scary.

cassP Contributor
cassP
Posted

I am brand new to this forum and am afraid I'm going to ask something g that's been asked before, but...I'm desperate!!

I have had severe GI issues for years (constipation and nausea) I've been told it's severe IBS, which has been frustrating since nothing much can be done for IBS. In July 2008, I became so impacted that I had to have half of my colon removed. I drank 2 doses (2 gallons) of GoLYTELY and produced nothing.

Following the surgery, I was still in severe pain and was kept on a dilaudid drip through PICCADILLY line for 2 months. That caused complete Gastroparesis. Which led to detoxing from Dilaudid. Which led to other complications...argh. It turned out I had a horrible bacterial overgrowth in my small intestine.

Fast forward a year...the constipation returned with a vengeance. I was achy and fatigued all the time, to the point I was missing work. I developed a rash on my back and legs. I developed Raynaud's and mouth ulcers. I had to use an enema i order to have a BM. Things were getting really bad.

I was tested for celiac and blood tests came back negative, so I dismissed it. BUT...when my GI started talking about putting a pace maker into my gut, I got desperate and began a gluten-free diet. Two days later, the fatigue was greatly improved. Five days later, I had a BM without an enema. And then I had two the next day. I've had 2-3 a day since then. My stomach, it turns out, wasn't fat. It's flat, unlike it's distended state prior to gluten-free.

So...is it possible to have Celiac and have a negative blood test? I remember my doctor saying "there are two tests. I'm going to do the better one on you." I've had lots of colonoscopies but never an endoscopy. HELP!

WOWWWW this is quite a testimony- and could really be so helpful to others who just listen to their doctor say "negative" and then never go gluten free.

1st off- your doctor is wrong to say there are only 2 tests. and how does he decide what is the best test????? so many of us have only had 1 positive out of 3... or very suspicious "weak positives"... some docs think the TTG is the best... others now are saying the Deamidated Antigliadin is the best.. and in other places i have read the Endomysial Antibody is 100% specific to Celiac. this disease is so damn tricky and so misunderstood that you really need ALL 3 of these Tests.. PLUS a Total Iga Serum test. it's just too presumptious to just do one test- these doctors are putting money ahead of our health!!!

your body KNOWS!!! and im so sorry you had to go thru all that pain- but so happy you're deciding your own health now- i hope you continue to recover!!!

fairydust81 Rookie
fairydust81
Posted

I really feel for you, it's so awful what you have been through...

It is always possible to have false negatives and like other diseases even people with coeliac, still with gluten in their diet can have negative bloods - rheumatoid arthritis for example, you can have all the outward symptoms and bloods for inflammation are high, but the key diagnostic test can come back negative - thankfully that is well recognised and is now called sero negative RA -

I have been doing a food diary for the last month and this helped to pinpoint a pattern between my rash and the arthritis flares and all the GI issues, definitely helps to show any patterns/trends between symptoms you have and foods that you eat etc.

I hope things continue to improve for you now you are gluten free

Skylark Collaborator
Skylark
Posted

I'm glad to hear you're better!

Celiac blood tests only detect celiac maybe 70-75% of the time so it's absolutely possible to be celiac and have a negative blood test! It's also possible to be very sick from non-celiac gluten intolerance. Trust your response to the diet above anything else.

Pink Angel Newbie
Pink Angel
Posted
  • Author

Thanks so much, everyone! I'm touched that people who I don't even know would respond to my post!

I have an appointment with my GI tomorrow. I'm dreading telling him that I went gluten-free because along with it, I'll be telling him that I'm not taking the meds he prescribed anymore as well. (He gave me Amitiza and told me to drink GoLYTELY once/month, but since neither worked, I stopped both).

Does anyone have suggestions for what I should be asking him about? Should I have Amy tests done, or does it even matter if I'm not eating gluten anyway?

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

Celiac.com Sponsor (A8-M):


GFinDC Veteran
GFinDC
Posted

The only thing I'd ask your GI is to recommend another GI or doctor who understands celiac disease. And then I'd stop seeing him.

They can do an endoscopy and take biopsy samples from your upper small intestine. Those can be checked under a microscope for villi damage. But if you have been gluten free it isn't likely to show damage after a few weeks.

Same with the blood antibody tests, they are no use after you go off gluten.

ravenwoodglass Mentor
ravenwoodglass
Posted

Thanks so much, everyone! I'm touched that people who I don't even know would respond to my post!

I have an appointment with my GI tomorrow. I'm dreading telling him that I went gluten-free because along with it, I'll be telling him that I'm not taking the meds he prescribed anymore as well. (He gave me Amitiza and told me to drink GoLYTELY once/month, but since neither worked, I stopped both).

Does anyone have suggestions for what I should be asking him about? Should I have Amy tests done, or does it even matter if I'm not eating gluten anyway?

Don't worry about telling the doctor you went gluten free and it is helping as it may help others who come along after you. The rate of false negatives is pretty high with celiac testing but the body knows the answers. It seems pretty clear that the diet is helping you a great deal. Stick with it strictly. Perhaps your experience will help the doctor suggest trying the diet for folks that have negative blood work but still have symptoms suggestive of celiac. Do ask the doctor to run a vitamin and mineral panel to make sure you do not have any defieciencies. If he doesn't want to do it ask your GP.

Pink Angel Newbie
Pink Angel
Posted
  • Author

Here is the oddest thing...I LOVE my GI. He's the director of a top university hospital an specializes in functional motility disorders. When I had the hemicolectomy an went into complete Gastroparesis, he's the one who helped me transfer to his hospital and treated me for narcotic bowel. He deals with people who haven't been believed...and he is the one who ran the controversial hydrogen breath test on me and discovered a horrible bacterial overgrowth. Oh well we shall see how it goes tomorrow! (BTW...I was accidentally given gluten tonight at a restaurant, even after calling ahead and informing the waitress that I needed gluten-free...so I'll see if it does anything)!!! Thanks SO MUCH to all of you. I'm only 2 weeks into gluten-free. I'm hoping it only gets better. :)

T.H. Community Regular
T.H.
Posted

Wishing you the best of luck with this one!

Hopefully, if he's this good, your experience will really help him become even better. There's so much information to learn, these days, that sometimes it's hard for a doctor to keep up. And considering that constipation is only recently recognized as a celiac issue (I had constipation, but not nearly as bad as yours. Mine would come and go).

Your experience might end up helping a lot of his future patients. Maybe even some of his current ones. Let us know how the appointment goes!

mommida Enthusiast
mommida
Posted

You could have the genetic testing done to see if you are positive for known Celiac genes. That is not the "gold standard" diagnoses though.

It is also known that a gluten free diet is helpful in treating IBS and autoimmune disorders.

ravenwoodglass Mentor
ravenwoodglass
Posted

You could have the genetic testing done to see if you are positive for known Celiac genes. That is not the "gold standard" diagnoses though.

It is also known that a gluten free diet is helpful in treating IBS and autoimmune disorders.

That is an option but if you are one of those celiacs that don't carry one of the two most common genes it may end up confusing matters. There are folks who are diagnosed by both blood and biopsy who then get the gene tests done and are told that they couldn't be celiac as they don't have the genes. That happened in my family as we carry a gene that is not a recognized celiac associated gene here when it is a recognized celiac associated gene in other countries.

Also keep in mind that there are folks who have the associated genes and never develop celiac. So in the end while gene testing can be useful it is not diagnostic.

mommida Enthusiast
mommida
Posted

That is correct some genetic testing can just add to the puzzle. They don't know all of the genes associated with Celiac and there is still error rate. At least 30% possibility of human error for any test.

Our genetic testing experience... My daughter positive for DQ2 and DQ8. My testing completely negative for any known Celiac genes and clearly not even showing a genetic link to my own daughter. Prometheus would not retest, just rescinded the 98% accuracy and also declared that genes mutate. They said I must have fallen into the 2% range of known miss and 30% of human error in handling.

Archived

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

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

  • Member Statistics

    • Total Members
      132,872
    • Most Online (within 30 mins)
      7,748
    Koyanna
    Newest Member
    Koyanna
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
×
×
  • 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.