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Food Intolerance Symptoms - Gluten Or Other?

Rhoger1

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Rhoger1 Rookie
Rhoger1
Posted

Hi all, am new to this site and it has been very helpful so far.

I was wondering if anyone else has the same symptoms I have and can provide some guidance. Seems to have hit me over the past 4 months starting with "D" and loose stools without much notice occuring 1 or 2x per week. As time went on, symptoms got worse to currently involving loose stools (not formed) 5, 6 x per week and 2,3 times per day. Also starting to get stomach pain that seems to last for many days, almost feeling like the system is trying to heal itself, but struggling.

GI Dr. says everything is ok....colonoscopy fine, blood work negative for celiac, etc. Seems going on Gluten free diet is making it better, but not completely. Been off Gluten for a 1 month now, was good for first 2 weeks then minor symptoms came back (stomach pain, gurgling).

Questions: Do only these GI symptoms show up with Gluten, other food intolerances? After ingesting, how long does the system take to recover (stomach pain, formed stool, gurgling stop, etc)

I've also sent away for the lab stool samples, but not sure if that will tell me anything...

Gluten Free since April 25

Dairy Free since May 10

Thanks.....Rhoger

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FMcGee Explorer
FMcGee
Posted

Might you be lactose intolerant? Also, did you stop eating gluten before your blood test? That could result in a false negative.

ang1e0251 Contributor
ang1e0251
Posted

A colonoscopy does not dx celiac disease. You should have had an endoscopy. You can have false negatives in the blood work.

As to your ongoing symptoms, the other poster is right, many of us have to give up dairy for a time in the beginning. Some can add it back in after some healing.

The fact that you felt well in the beginning, then some of your problems returned, could be one of two things. Either another problem is creeping up (dairy?) or you are getting sneaky gluten from some source.

Review your diet carefully and even jot down a food journal with your symptoms also. THe writing it down can be very revealing. You can post your diet here if you want help.

Rhoger1 Rookie
Rhoger1
Posted
  • Author
A colonoscopy does not dx celiac disease. You should have had an endoscopy. You can have false negatives in the blood work.

As to your ongoing symptoms, the other poster is right, many of us have to give up dairy for a time in the beginning. Some can add it back in after some healing.

The fact that you felt well in the beginning, then some of your problems returned, could be one of two things. Either another problem is creeping up (dairy?) or you are getting sneaky gluten from some source.

Review your diet carefully and even jot down a food journal with your symptoms also. THe writing it down can be very revealing. You can post your diet here if you want help.

Thanks for the info. I scheduled an Endoscopy for next week. Diet today excludes Gluten, Dairy, Recently Soy and Corn. I've been very careful with the Gluten and CC. I did notice an issue when starting Gluten Free products.....think it may be the Soy...but more testing.

Lisa Mentor
Lisa
Posted

For the best accuracy in testing for Celiac, you must remain on a full gluten diet.

If you have damage due to Celiac, it will take a while for healing to take place. In the mean time, any food, gluten or not, can be difficult on your system.

I would remove one item at a time with the exception of gluten and dairy.

Katea Rookie
Katea
Posted

Hi Rhhoger,

I was reading your post and had to check that it wasn't my own. lol

I have been gluten-free for over 2 months now after testing negative on blood and biopsy. I saw a positive change over the initial couple of weeks but then most symptoms returned. I have tried lactose free (been on it for the last 2 weeks)diet and after a consultation with the dietitian also excluded certain other foods without much success.

I still can see the benefit of being off gluten however that alone does not address my issues. It seems pinpointing your intolerance is not easy and likely to be a time consuming process (unless unlike me you are lucky to stumble on your problem foods early).

Hope you get some answers soon. Seems like I will need to hang around for some time longer...

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    • knitty kitty
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      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
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      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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