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Help, Please!

neylonas

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neylonas Rookie
neylonas
Posted

I am turning to you all for any assistance you can offer. I am a 30 year old female who has been diagnosed with IBS (about 1 year ago). My symptoms include excessive bloating, gas...constipation followed by diarrhea, extreme discomfort, etc. The dr. ordered bloodwork initially and all came back negative for celiac. I have completely cut out dairy and am currently on Amitiza for the IBS, but things are bad. I consume about 4-8 Gas-X pills a day because that is the only thing that makes me feel somewhat better. the doctor has beena bit dismissive when I suggested the posibility of Celiac.... Had an endoscopy and they determined that I have a hiatal hernia...no biopsy was done though...

Here are my questions:

Do these symptoms sound familiar to anyone?

Any suggestions about what to do next?

Books, resources, etc???

Any info would be greatly appreciated. I am so sick of feeling sick!

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elligal Newbie
elligal
Posted

Why is Dr. being dismissive? That's not a good quality in a doctor. Sometimes you have to be persistant.

Eriella Explorer
Eriella
Posted

These sound very familiar... Because your blood work came back negative, it means a couple of things: you do not have a problem with gluten, your body doesn't produce antibodies to the gluten, but absolutely can't have it (me); or the test was wrong. The easiest way to find out is to go 100% gluten free for 60+ days to see how you feel. There is no risk of harm going on a gluten free diet without a diagnosis. When I went gluten-free, I felt better after 24 hours and my symptoms started going away after 10 days, but some people get no improvement for a month.

If you do go gluten free, keep a food journal of everything that goes in or on your body so you can tell if you have hidden gluten (shampoo, lotion, pesky food companies that changed their ingredients). If you feel better off of gluten, and have been better for at least a month, you can ask your doctor of a diagnosis of gluten intolerance based off of a positive dietary response. It isn't quite a celiac diagnosis because there is both a non-celiac and celiac form of gluten intolerance, but it is a way to classify yourself and to get a medical note if you need one

As far as books-- I don't have time to read them, but people recommend Dr. Greene's book and Gluten Free for Dummies. As far as resources-- this site has more information than anywhere else. For a basic how to start guide, see Open Original Shared Link

cookie22 Newbie
cookie22
Posted

it sounds to me like you're in the right place. Have you been tested for crohn's and or colitis?

EmmaQ Rookie
EmmaQ
Posted

Have you ever heard of the Carbohydrate Specific Diet?

I would start there.

The gut needs to be healed to be well.

The Maker's Diet is an interesting read, not sure if I buy it all, but it is good if you have the disipline to give up everything and try dirt to feel well. I think it worked for him, may or may not work for someone else.

ElenaDragon Explorer
ElenaDragon
Posted
I am turning to you all for any assistance you can offer. I am a 30 year old female who has been diagnosed with IBS (about 1 year ago). My symptoms include excessive bloating, gas...constipation followed by diarrhea, extreme discomfort, etc. The dr. ordered bloodwork initially and all came back negative for celiac. I have completely cut out dairy and am currently on Amitiza for the IBS, but things are bad. I consume about 4-8 Gas-X pills a day because that is the only thing that makes me feel somewhat better. the doctor has beena bit dismissive when I suggested the posibility of Celiac.... Had an endoscopy and they determined that I have a hiatal hernia...no biopsy was done though...

Wow, you just described my symptoms almost exactly! I am 28, female, and was diagnosed with IBS last year. I have been following the Eating for IBS diet on Open Original Shared Link, but my symptoms seem to have only been getting worse. I too have horrible bloating and gas. I am constipated during the day, but after the gas gets through, every morning I have diarrhea as soon as I wake up. For the past month or so I have also been having abdominal pain on both sides (more on the left than the right). My doctor gave me Bentyl for the IBS, and my celiac blood panel came back normal. I've tried Gas-X, and it doesn't do much for me, but I have only taken one at a time.

Gluten being the problem for me seems to make sense. I have already cut out dairy and soy, but gluten has been pretty constant in my diet (although not heavy). I am going to call my doctor's office to find out the details of my blood test results (numbers), and I decided to go ahead and try going gluten free for a while to see if I notice a difference. I've tried so many other things that it's worth a shot! Today is my first day, and so far I feel fine. Not much to go on yet though. :)

Mally-bug Apprentice
Mally-bug
Posted
I am turning to you all for any assistance you can offer. I am a 30 year old female who has been diagnosed with IBS (about 1 year ago). My symptoms include excessive bloating, gas...constipation followed by diarrhea, extreme discomfort, etc. The dr. ordered bloodwork initially and all came back negative for celiac. I have completely cut out dairy and am currently on Amitiza for the IBS, but things are bad. I consume about 4-8 Gas-X pills a day because that is the only thing that makes me feel somewhat better. the doctor has beena bit dismissive when I suggested the posibility of Celiac.... Had an endoscopy and they determined that I have a hiatal hernia...no biopsy was done though...

Here are my questions:

Do these symptoms sound familiar to anyone?

Any suggestions about what to do next?

Books, resources, etc???

Any info would be greatly appreciated. I am so sick of feeling sick!

Have you tried the gluten free diet? That's what we did - without a dx. We are going through enterolab, but have had really great results with the diet. Give it a try - what can you lose but your symptoms? :rolleyes:

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Mally-bug Apprentice
Mally-bug
Posted
These sound very familiar... Because your blood work came back negative, it means a couple of things: you do not have a problem with gluten, your body doesn't produce antibodies to the gluten, but absolutely can't have it (me); or the test was wrong. The easiest way to find out is to go 100% gluten free for 60+ days to see how you feel. There is no risk of harm going on a gluten free diet without a diagnosis. When I went gluten-free, I felt better after 24 hours and my symptoms started going away after 10 days, but some people get no improvement for a month.

If you do go gluten free, keep a food journal of everything that goes in or on your body so you can tell if you have hidden gluten (shampoo, lotion, pesky food companies that changed their ingredients). If you feel better off of gluten, and have been better for at least a month, you can ask your doctor of a diagnosis of gluten intolerance based off of a positive dietary response. It isn't quite a celiac diagnosis because there is both a non-celiac and celiac form of gluten intolerance, but it is a way to classify yourself and to get a medical note if you need one

As far as books-- I don't have time to read them, but people recommend Dr. Greene's book and Gluten Free for Dummies. As far as resources-- this site has more information than anywhere else. For a basic how to start guide, see Open Original Shared Link

I am totally new to all of this...have only been on the gluten-free diet for less than a week. So you are saying that there are you can be a non-celiac but still have a gluten intolerance? I am going to try to research it but if you could give me a little insight on that, it would be great. I have also had a very positive dietary response already, but have not had the actual diagnosis yet, so any information you can give is great. thanks...

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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      Contact them.
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