Celiac tests negative but I stll have all of the symptoms

[bpetroni]

So I have had the blood and Upper GI biopsy tests for Celiac disease come back as negative but I still have the symptoms. Irregular bowel movements, headaches, dizziness, stomach cramps, depression/anxiety etc. I have been tested multiple times because I have had gastrointestinal issues for many years now and my mother has Celiac really bad. I was actually dissapointed when the last test came back as negative because at least it would have been an answer. I recently read up on non-celiac gluten intolerance and was wondering if any of you have this condition being as there are no tests for it?

Edited October 28, 2019 by bpetroni
spelling

[GFinDC]

Hi,

There are more people with NCGS than there are with celiac disease.  You are right there are no tests for NCGS.  But it's possible that some of the people who think they have NCGS are actually FODMAP intolerant instead.

You could try a low FODMAP diet for a few months to see of it helps.  You can also try the gluten-free diet to see of things improve.  Celiac disease testing isn't perfect and can miss some people.  You could have it but your body just may not test well.  Maybe in a few years your blood antibodies would show up better.  But who wants to wait a couple years to get started healing?  Not me.

If you do decide to trial the gluten-free diet make sure and do a serious job of it.  Even tiny amounts of gluten can kick off the immune reactions and cause symptoms for months.

Do you know if you had the full celiac panel?  Often they do only the ttg IgA blood test for screening.  But there are several more tests they can do like IgG antibodies and EMA.  You may show positive on one of those tests.  It would be wise to get the blood test results from your doctor in writing.

[trents]

"You could try a low FODMAP diet for a few months to see of it helps.  You can also try the gluten-free diet to see of things improve.  Celiac disease testing isn't perfect and can miss some people.  You could have it but your body just may not test well.  Maybe in a few years your blood antibodies would show up better.  But who wants to wait a couple years to get started healing?  Not me."

This^

But I would start with one or the other and not both at the same time. If you do both at the same time and feel better you won't know which was the problem. Or, do both at the same time and then if you feel better, go off one of them at a time and see if the symptoms return. The FODMAP diet eliminates a lot of nutrition-packed foods so if you don't need to be eliminating those foods you wouldn't want to.

[cyclinglady]

I could have sworn my little niece (teen) had celiac disease.  She was thoroughly tested and celiac disease was firmly ruled out.  Finally, her 4th GI ordered a pill camera.  It found severe damage beyond the reach of both scopes.  She was diagnosed with Crohn’s.

While celiac disease has a strong genetic component, you might not ever develop it,  you could be in the early stages, or you could have NCGS.  In that case, trialing the gluten-free diet might be beneficial for you.  I guess I am trying to say is do not get stuck on celiac disease.  You might have another autoimmune disorder or illness.  

Trents and GFinDC offer excellent advice.  

 

[bpetroni]

Thank you sooo much for all of the great advice. I was not even aware of FODMAPs. I have been on a Gluten-Free diet for about a month and it has helped a little but I do still get symptoms. Thanks for the information about the pill cams CYCLINGLADY I was not aware of them either and my sister has Crohn's disease. I have been stuck on Celiac being my issue and you all have given me new hope and direction to bring up to my GI doctor.

[GFinDC]

Hi again bptroni,

Since your symptoms have improved some on the gluten-free diet that is a pretty strong indicator that gluten is a problem for you.  If gluten is not a problem there shouldn't be any change from stopping eating it.

We do have members with NCGS on the forum.  I don't know if any of them will pop in or not.

Your symptoms changing but not going away in a month is pretty usual for someone with celiac starting the gluten-free diet.  Recovery from celiac disease damage can take 18 months or longer.  Also, learning the gluten-free diet is something that can take  awhile to get right.  Mistakes are common at first.

First degree family members of a celiac have a higher than normal chance of getting celiac themselves.  Perhaps 40% to 50% higher chance.

Are you having any problems with dairy, especially lactose?  Lactose is a sugar in cow milk.  It is digested by an enzyme produced in the small intestine.   Many people with celiac disease have lactose intolerance at first.  It may resolve after some months gluten-free though.

[bpetroni]

On ‎10‎/‎29‎/‎2019 at 2:15 PM, GFinDC said:

Hi again bptroni,

Since your symptoms have improved some on the gluten-free diet that is a pretty strong indicator that gluten is a problem for you.  If gluten is not a problem there shouldn't be any change from stopping eating it.

We do have members with NCGS on the forum.  I don't know if any of them will pop in or not.

Your symptoms changing but not going away in a month is pretty usual for someone with celiac starting the gluten-free diet.  Recovery from celiac disease damage can take 18 months or longer.  Also, learning the gluten-free diet is something that can take  awhile to get right.  Mistakes are common at first.

First degree family members of a celiac have a higher than normal chance of getting celiac themselves.  Perhaps 40% to 50% higher chance.

Are you having any problems with dairy, especially lactose?  Lactose is a sugar in cow milk.  It is digested by an enzyme produced in the small intestine.   Many people with celiac disease have lactose intolerance at first.  It may resolve after some months gluten-free though.

I do have problems with lactose, ice cream will upset my stomach and excuse the expression but cheese really plugs me up. I dont drink milk I prefer almond milk. Your right about the gluten-free diet I ate some mushrooms and got very sick. I know that mushrooms dont usually effect a person with Gluten sensitivity but I learned that they can be grown on gluten grains. Of course mushrooms are on the FODMAP list too so.

Thanks

[GFinDC]

Having lactose intolerance is not usually a symptom of NCGS because NCGS doesn't cause gut damage.  So lactose intolerance is more an indicator of possible celiac disease.

There is not much lactose in hard cheeses.  So it could be you have a reaction to milk proteins as well.  I have that myself and don't eat any cheese or any dairy.

You might do ok with sheep or goat cheese.  Some people can eat those.  I'd stay away from it myself.  But you might want to try it after a few months of healing if you do the gluten-free diet.

[bpetroni]

12 hours ago, GFinDC said:

Having lactose intolerance is not usually a symptom of NCGS because NCGS doesn't cause gut damage.  So lactose intolerance is more an indicator of possible celiac disease.

There is not much lactose in hard cheeses.  So it could be you have a reaction to milk proteins as well.  I have that myself and don't eat any cheese or any dairy.

You might do ok with sheep or goat cheese.  Some people can eat those.  I'd stay away from it myself.  But you might want to try it after a few months of healing if you do the gluten-free diet.

Thanks have you ever heard of somebody having a reaction to mushrooms? I dont think I have Celiac I have no stomach damage

[GFinDC]

People can have reactions to any food.  There is a wide variety of foods that people on the forum react to in addition to wheat, rye and barley.  The stomach is not the primary place celiac disease damages.  Instead it is the small intestine that celiac causes damage to.

[bpetroni]

On 10/31/2019 at 8:50 PM, GFinDC said:

People can have reactions to any food.  There is a wide variety of foods that people on the forum react to in addition to wheat, rye and barley.  The stomach is not the primary place celiac disease damages.  Instead it is the small intestine that celiac causes damage to.

I had a Upper GI performed and they found no evidence of damage. I guess food allergies are like mental health issues. There are no definitive answers or solutions because we are all so different and its a all just a guessing game? 

[cyclinglady]

On 10/31/2019 at 6:42 PM, bpetroni said:

Thanks have you ever heard of somebody having a reaction to mushrooms? I dont think I have Celiac I have no stomach damage

I can not consume mushrooms.  There is a specific name for a mushroom intolerance.  You can google more about it.  Here is a quick article, but I do not know if the source is reliable.  But it is a place to start.  

https://www.xcode.life/23andme-raw-data/mushroom-intolerance/

I am  not promoting 23 and Me, which is discussed in this article.  I worry about ramifications in getting things like life insurance. Plus, it may not be accurate per this Canadian reporter who tested herself and her twin.  

https://www.cbc.ca/news/technology/dna-ancestry-kits-twins-marketplace-1.4980976

Now that your stomach and small intestine has been been biopsied and you are clear from celiac disease, etc. think about changing your diet.  Let’s say you might be brewing an autoimmune disorder (your Mom has celiac disease and your sister Crohn’s), but it is too early to identify it.  What are you going to do?  My own GI poised this question to me.  Frankly, I want to avoid any drugs.  I know that although they can help,  but they can also cause hurt.    Biologics, like the one my niece is on, are expensive and have serious side effects, but you have to weigh consider quality of life.    I chose to avoid drugs and to eat a strict gluten-free diet for now (and doctor’s approval).     My goal is to prevent a fourth AI from developing like Autoimmune diabetes (yes, it can develop at anytime in your life) or lupus which my Grandmother had.  Diet, exercise and reducing stress is what I am choosing to do at this time (again, with my doctor (s) support and agreement).  

Consider keeping a food journal as suggested.  It can be very valuable and worth the time to identify patterns.  You will find your way.  Keep researching and learning.  It is your best defense.  

Edited November 2, 2019 by cyclinglady

[GFinDC]

1 hour ago, bpetroni said:

I had a Upper GI performed and they found no evidence of damage. I guess food allergies are like mental health issues. There are no definitive answers or solutions because we are all so different and its a all just a guessing game? 

For some people they get a definitive diagnosis quickly.  For others it may take years for symptoms to get bad enough to get the diagnosis.  Most people with celiac disease are still not diagnosed.  Doctor often won't test for it or will not do the full celiac antibodies panel   And some people only show up positive on one of the types of antibodies, not all of them.

There is a test you can do yourself for food intolerances.  It is called an elimination diet.  Pick out 5 foods that you think are safe and eat just those foods for a week or 2.  Then add one new food and see how thing go for 3 days.  If symptoms show up put that food in the trash can from then on.

By the way, celiac disease is not an allergy.  It is an autoimmune condition fueled by IgA and IgG antibodies.   Allergies are caused by IgE antibodies.  Allergies tend to affect breathing and eyes.

[NNowak]

I agree, it takes years sometimes to be diagnosed with an autoimmune disease. Specifically, the test for Celiac isn’t sensitive enough to detect the antibodies in the beginning stages. I have 4 kids and they all have one of the genes (I have both).  My oldest was diagnosed with Celiac at age 14 months after 9 months of immune deficiency causing mastoiditis, septicemia, etc. Due to the genetics of the younger three children, the pediatrician put all my kids on a gluten-free diet until middle school. After two months of a gluten challenge the younger two were tested - all clear. However, my 12 year old daughter has classic symptoms of Celiac now on a gluten diet.  Allergy test was negative, but immunologist diagnosed her with NCGS and advised her to avoid gluten. She also has an issue with dairy. Celiac is very prevalent in my family following the statistics of 44% of first degree relatives testing positive. 
My opinion is to avoid the full development of the disease, if possible, by following a gluten-free diet. You can look into the FODMAP diet to follow the elimination criteria. Over the years I unknowingly implemented this myself due to multiple food reactions. I only learned it had a name when the immunologist recommended it for my daughter. As a Crohns patient, my dad has to follow the FODMAP diet and a gluten-free DF diet. There’s also the Paleo diet, which is helpful for some. You may find that you will be sensitive to some foods now, but after a time of healing your body may not react to the offending food anymore. If you haven’t already, get tested for vitamin deficiencies. You want to ward off additional problems and clear a multivitamin with your PC doc. Listen to your body. Good luck!!

[Awol cast iron stomach]

On 10/31/2019 at 8:42 PM, bpetroni said:

Thanks have you ever heard of somebody having a reaction to mushrooms? I dont think I have Celiac I have no stomach damage

Over the past three years I only reacted to one purchase of mushrooms. I am not certain if they were grown near or on grains or somehow cc before purchase at store. 

We buy mushrooms from the 3 stores I do not have problems with their mushrooms and just crossed the bad mushroom reaction  store off list for mushrooms going forward.

 

[L Black]

Microscopic colitis?  You'd need a colonoscopy.  A majority of sufferers do not test positive for celiac, but do improve with removal of gluten from the diet.  (And casein)