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Help! Is This Possible?

irish daveyboy

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irish daveyboy Community Regular
irish daveyboy
Posted

Hi all,

I need help for a change!

I'm gluten-free for 3+ yrs, recent biopsies show Villi completely healed,

full blood test normal limits

(slightly elevated blood sugar 6, and cholesterol 6.5)

.

My problem is I have developed a extremely large distended stomach

over a period of about 10 months.

I was searching for an answer and IBS is a high probability a lot of the symptoms fit.

.

Bowel Movements 4 - 5 a day.

Always feeling full even after just eating 1 gluten-free cracker.

Onset of Panic attacks, especially at night.

Trapped wind, 'belching and flatulence'

Difficult in sleeping (need to use a back rest)

Facial rash, not unlike pre-diagnosis.

.

.

I have been for a Stomach X-Ray.

Next appointment is for an 'Ultrasound'

.

Specialist wants to eliminate Fluid and Fat Deposits

around the Stomach, and God forbid a Tumorous Growth.

.

Is IBS possible or am I just clutching at straws, adding two and two and getting five.

.

I would appreciate your comments and suggestions.

.

Best Regards,

David

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ravenwoodglass Mentor
ravenwoodglass
Posted

Have you tried eliminating dairy and/or soy? Could you have some gluten sneaking in somewhere in your toiletries or some place else? Could something you use have changed formulation? Generic meds would be something to check as well as stuff you eat. It sounds like your doctor has a good plan for eliminating some of the more serious causes. I hope this improves for you soon.

jerseyangel Proficient
jerseyangel
Posted

Hi David,

I was going to suggest that it might be another intolerance, too. I get very similar symptoms to what you describe when I eat legumes.

Have you tried a trial of eliminating things like soy, dairy, corn, or eggs? I have found that I don't have to be off an offending food for long before I can tell that it was bothering me. It might be worth a try--it's harmless and you might just hit on something.

Best of luck with your ultrasound--keep us posted :)

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

I agree with above suggestions, and also think you might want to rule out:

candida infection

Lyme Disease (which can happen ANYWHERE to ANYONE, despite what most doctors say--40% of currently diagnosed Lyme patients do not recall ever having been bitten by a tick nor having had the famous "bull's-eye" rash. I do not have Lyme myself (that I know of), but have seen a student's father recover from it--diagnosed by a positive blood test after having been told for years that it was all in his head, that he couldn't possibly have it if he didn't have the rash, etc.)

Other bacterial infection of the gut

Candida would be my first suspicion, only because you have posted so many DELICIOUS recipes for breads and desserts!

GFinDC Veteran
GFinDC
Posted

It could just be a cyst too. My sister had a cyst in her abdomen for years that enlarged her stomach area. Eventually she had it removed, and no problem at all everything was fine.

ksymonds84 Enthusiast
ksymonds84
Posted

Hi David,

Although I feel great gluten free I still battle with IBS from time to time and it doesn't matter what I eat causing gassy distended stomach etc. I also belong to ibsgroup.org when I am having IBS issues, its a great forum like this one, with many intelligent helpful people. You may want to surf there or possibly ask their experts what they think. IBS though not a disorder, it is a syndrome that does cause symptoms that you have mentioned. When I was not totally getting better, my doctor told me that I am dealing with both conditions. I am also the type that will have the gas problems and loose stools over stress as well. Cutting out carbonated beverages, real coffee and other caffeine, fatty and fried foods helps me a great deal along with keeping my stress under control. Hope you find your answers soon!

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @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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      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • 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 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      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.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      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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