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Bubba's Mom

Member Since 29 Jun 2011
Offline Last Active May 13 2013 11:37 AM

#848582 Gluten Free Since Sept...but ... Still Sufferring

Posted by on 15 January 2013 - 07:45 AM

Maybe try a Paleo diet for a while? It removes grains, some dairy, refined sugars. There are tons of recipes online and you may be able to get books at the library?
Please remember that healing is a slow process. You will have up and down days.
Keep a food log and note any symptoms.
Once you have done more healing you can add foods back in, one at a time.
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#846937 Can Food Intolerances Be Just Bacteria Overgrowth In The Small Intestines?

Posted by on 05 January 2013 - 08:21 AM

After going gluten-free I started reacting to a LOT of other foods. I was given the hydrogen breath test at Mayo Clinic and had high readings in both hydrogen and methane. I was told I likely had a severe case of SIBO. I was given a couple of anti-biotics and didn't see any changes in my health, food sensitivities, or toilet habits. I was told antibiotics treat specific bacteria and apparently, they hadn't found the right ones for me? I was told to take probiotics to drive out the bad bacteria instead.
It's been 6 moths for me, and I still have seen no change in intolerances, and have added a few more. A recent endoscope showed that my villi look mostly normal now. When first DXed I had total villious atropy. It appears that I am healing? I recommend staying on a probiotic, especially if you have had recurring SIBO symptoms..
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#836110 How Many Of Us Assume A Gfd Will Fix It?

Posted by on 12 November 2012 - 03:27 PM

I went gluten-free and my symptoms lessoned. Then I noticed I was reacting badly to soy, then dairy, corn, peanuts, acidic foods, spices, high sugar content, the list keeps growing. I just dropped rice so now I'm grain free.
I recommend keeping a food diary and log any symptoms you have. It's a good idea to drop dairy for a while, and I read on Mercola's site today that soy should be dropped too. We are all different, and I guess if we are intolerant to gluten, it's not a far stretch to have other intolerances too? The trick is finding what yours are.
Once completely healed many foods can be added back.

I'm beating the drum about GMOs too. Avoid them if you can. GMO foods are soy, corn, canola, cottonseed, sugar beets, papaya, and zucchini and yellow squash. Organic foods are less likely to have pesticide residue too, which can tear up a sensitive systyem.

Have you read the thread about Nettle tea helping a lot of us? Maybe try that?
I just read that Hawthorne berry tea calms a stressed digestive system too. I haven't tried it yet though.
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#836095 Blood Test Results High Mcv

Posted by on 12 November 2012 - 02:43 PM

Hi everyone!

I am new here! Have been reading a lot of posts and this forum has been super helpful!

Have had stomach issues for a very long time. This year some symptoms are more prominent ("fluffy stools", abdominal pain) Finally went to the GI who suggested based on my symptoms that I could have an ulcer, H pylori or Celiac Disease. He asked about my kids and if they had allergies... my oldest had very bad allergies and we had to use a nebulizer for him to stop coughing. He outgrew it. My youngest has eczema on his shins and elbows. He said he really thought this was gluten related and if I tested positive I should have my kids tested as well. He gave me Prilosec to take for 2 weeks.

He ordered the full Celiac Panel Blood Test, tested for H Pylori and some other things.
Just got a call from the nurse and said everything was normal, no signs of Celiac. H Pylori negative. I did have enlarged red blood cells (MCV) and now have to get my B-12 and folate checked. I am a vegan so it makes sense I could have a B-12 deficiency.

My question, what about my stomach? Why does it still hurt and why do I have the "fluffy" stools? Even with a B-12 deficiency these symptoms don't make much sense!

Anyone else have gone through this? Thank you so much in advance!!!!


You could be a sero-negative Celiac? Around 20-30% of us are. If your testing is done you can try gluten-free and see how you feel?
Fluffy stools could indicate that your gallbladder isn't working properly. More of a reason to try the gluten-free diet IMO.
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#835823 Can Somebody Help Me Figure Out Where To Go From Here?

Posted by on 11 November 2012 - 10:06 AM

Have you tried taking him off all grains? Some of us just don't seem to tolerate any at all.
The loss of iron would suggest either malabsorption..or a bleed somewhere? If your son takes iron supplements it will make his stool hard, and can cause hemerhoids in the colon. When the stool passes through, it could cause them to bleed...causing a loss of iron. It's a vicious cycle.
Maybe ask for an iron infusion and take him off suppplements to see if that helps?
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#824183 What's Your Go To Recipe

Posted by on 18 September 2012 - 01:18 PM

My go-to easy meal is breakfast for supper. Bacon, eggs or an omelet...or a bowl of cereal.
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#820657 My First Post, New To Intolerance And Still In Distress

Posted by on 31 August 2012 - 06:15 AM

Gluten is not my friend. A few months ago I realized the digestive distress was caused by gluten. After removing the main sources, I then proceeded to make all the newbie mistakes with the hidden gluten. Since my reaction Lasts for 3-4 days, I have had few days of feeling healthy in the last 2 months. Some examples of the hidden culprits include the caramel color in balsamic vinegar, gluten-free pizza from a pizza parlor, gluten-free ice cream from Ben n Jerry's ice cream parlor, margaritas from a restaurant, etc.

Even with my increased knowledge and vigilance, I am still getting sick! My symptoms include many of the usual; diarrhea, severe cramping that can even wake me up at night, depression, brain fog, ...probably more but im currently depressed and in a brain fog. So now I'm keeping a food journal and trying to limit corn and soy. I'm already lactose intolerant and limit dairy (plus take lactaid). And I am as vigilant as possible about keeping my food separate from my husband's and children's, though I can get resentful about all they can eat.

Medically, I already had a blood test come back negative for Celiac (3 antibodies tested). The next step is to see a gastroenterologist. I have read about stool tests done by chiropractors and acupuncturists, but the medical community is not convinced of their accuracy. I'm not sure I want to pay lots of money for something that isn't accurate. On the other hand, what could a gastroenterologist do for me, other than rule out parasites and bacterial infections?

Does anyone here have any experience with the medical side to share?
Anyone have a suggested food plan for discovering other possible intolerances?

I just wanted to add..20-30% of us test negative in our blood work but have Celiac disease anyway. A GI can do an endoscope to check how your stomach lining and intestines look. Biopsies can be done at that time.
I tested negative but was scoped. My Celiac was found by the endoscope.

It would be a good idea to take probiotics. A small intestine bacterial overgrowth (SIBO) can cause reactions to a lot of various foods. The bacteria feed on what you've eaten and emit toxins, which you react to. A GI can test for this also. IMHO it would be a good idea to see a GI to see if anything can be sorted out for your food reactions. If you do indeed have Celiac, you will have to be extra concerned about trace gluten because it could keep your immune system inflamed and open the door to additional auto-immune diseases.
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#820504 The 100% Positive Thread

Posted by on 30 August 2012 - 07:53 AM

I don't have to scope out where the bathrooms are wherever I go! :D
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#820002 Chebe Revisted

Posted by on 27 August 2012 - 07:57 AM

Thanks so much for sharing your cooking method. I probably wouldn't have thought to use the cast iron and it sounds like it worked well?
I haven't tried the Chebe mix, but I see my grocery store carries it. I'm real tempted to run out and get some to go with the pot of beef stew I'm making for supper. My hubby and son would be thrilled! :D
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#819999 Other Intolerances Linked To Gluten

Posted by on 27 August 2012 - 07:29 AM

Hi All,

I am gluten intolerant and have been gluten free for awhile. I have noticed however that there are other foods that my stomach cannot tolerate. i.e. dairy, certain corn products, and I cannot handle large amouts of sugar.

Is there a list or "common knowledge" list of what other intolerances come alog with being gluten intolerant? I seem to remember that I have seen such a list, however I do not have it.

I would find this helpful because I have been cleaning up my diet. I still find that I am eating something that leaves me bloated, etc etc the next morning.

Guessing game isn't it?


If you have damage to the tips of your villi you may not be making the enzyme that breaks down lactose? It's best if we go dairy free at first.

Your intolerances will be unique to you, but often times soy, dairy, and corn seem to pop up as main offenders.
Sometimes you have to go low spice or limit nightshades (tomatoes, potatoes, peppers, eggplant)for a while until you are healed.
Some of us react to high salicylate foods, some to greasy foods, etc.

My best recommendation is to go off dairy for a bit and keep a food log. Write down everything that you eat..and note any symptoms you have. Many food reactions are delayed and your log will help you put the pieces of the puzzle together.

If you note having a lot of bloating or indigestion you may do well to take a digestive enzyme with food? Your problem with sugars and starches sort of points to your needing the additional enzymes.

Probiotics are another thing that most of us need to balance out our gut "flora". If you have any bacterial overgrowth it will make you bloat. Probiotics crowd out that bad bacteria.
Don't take digestive enzymes and probiotics together. The enzymes will break down the good bacteria.

I hope you can sort out what's giving you trouble..and heal fast so you can add things back in. It is a challenge isn't it?
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#819128 Negative Blood Test- Positive Biopsy

Posted by on 22 August 2012 - 10:49 AM

How common is it to have a negative blood test and a positive biopsy?

My blood test was negative and my doctor (maybe with good reason) never went any further with testing and dismissed celiac. About a year or two later I found out onmy own that gluten was one of the major culprits in my GI problems, so I went gluten-free.
A year after that I had a routine visit with my doctor and she asked how my GI stuff was going and I told her it was mostly fine, except when I ate gluten. She then proceeded to tell me that she'd had multiple patients who tested negative on blood come back and tell her they found out gluten was a problem...

I wonder how many people actually go through with the biopsy even when the blood is negative??

I was really sick when I first went to a GI. My PCP kept telling me there was nothing physically wrong with me..
When I told the GI my symptoms, which were many, and severe. She said she wanted to schedule an endoscope right away, along with a stomach emptying study, and some blood tests. I had blood drawn that day and my scope about a week later.

When she did the endoscope she said I had total villi flattening, scalloping, and a mosaic pattern in my intestine instead of villi. She DXed me on the spot and gave me pics. She also did several biopsies too though.
The results of my blood tests came in a day later. It was negative for Celiac. I'm so thankful that everything was ordered at once. Some Dr.s do the blood test and if it's negative don't look any further. The blood tests are wrong 20-30% of the time.
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#815355 Irishheart, Come Home!

Posted by on 01 August 2012 - 11:53 AM

IrishHeart is like the heartbeat of the forum. Who knows how many lives she has saved?
She's like a beacon of hope to all who enter here.

She's stern when someone is being pig headed, she's suportive when someone feels weak, she has a great sense of humor, and is so giving of her time and knowledge. She has a lot of hard earned knowledge! She has come from the brink of death..and her struggles continue, but she's always so giving to others.

Bartful said it best..she lets others know that she knows them, and that's so comforting. :D
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#814645 Outrageous Things I Have Said And Done!

Posted by on 29 July 2012 - 01:23 PM

My family has seen my many reactions. It's hard to understand, but reactions are real.
Things we used to do and not suffer from are suddenly making us very ill. I can't believe it myself sometimes! :o
It seems like some bad dream that we can't wake up from.

How about the avoiding kisses? Constant counter/stove wiping, hand washing, label reading(of eveythng!), wanting your own tv remote because the other one has orange Cheetos dust on it? :lol:
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#814623 Losing Hope...

Posted by on 29 July 2012 - 11:47 AM

Oh - one more question. The PCP told me to take Prilosec twice a day as well as Align twice a day. Expensive, not covered by insurance so I just want to know what the consensus here is. I've been taking both for 2+ weeks. Reflux is better but not sure what the probiotics are doing, if anything.

I was very sick..and my Dr. wouldn't listen to me. He kept saying there was nothing wrong with me..eat Tums..try increasing my antidepressant. I continued to go downhill. I was losing weight and didn't want to eat. When I did eat I felt lousy, had reflux, and nausea, bloating, gas...etc.

I found a GI on my own. She ordered the blood tests for Celiac and scheduled an endoscope and stomach emptying tests. My blood tested negative for Celiac. Around 20-30% of test negative. The endoscope showed severe damage. Not just villi blunting, but total flattening and ulceration.

I was DXed Celiac from that endoscope. I was told "You have Celiac disease. Don't eat gluten. Look it up on the internet" by the GI. Follow up blood tests were ordered that showed severe malabsorption as was expected.

I was told to follow up with my PCP. My PCP said he didn't agree with my DX and was no help. I was still experiencing a LOT of problems.

With a food/symptom log I was able to see that I couldn't tolerate soy in any form. Dairy was out too.
I continued to have problems, including weight loss and nausea. Additional food intolerances showed up.
Found a new GI and asked about testing for small intestine bacterial overgrowth (SIBO). He did another scope and said I "probably" had refractory sprue..and he wouldn't test me for SIBO, there's no way I could have it. Even asked me if "Dr. Google" told me to ask for the test! He did order a HIDA scan to test gallbladder function. Mine was low (30%)..and he suggested I see a surgeon to have it removed. He referred me to Mayo Clinic for my "refractory sprue".

After 3 visits and a lot of tests, my Celiac DX stands. I don't have refractory sprue. When I was tested for SIBO, the results came back a very strong positive. I was told that reacting to more and more foods can be caused by SIBO. The bad bacteria feed on your food and emit toxins. The probiotics you are taking helps crowd out bad bacteria and aids in digestion. Keep taking it.
The tricky part here is..if you are taking an acid blocker..it will make SIBO worse. Acid helps keep it in check. Reflux may just be a result of a food intolerance? A food log will help you figure that out.

My gallbladder wasn't funtioning properly, causing pain and nausea. The hormone(CCK)that tells the gallbladder to squeeze bile is produced in the duodenum. Damage there can prevent the hormone from being made..or being sent. In my case, the pancreas wasn't getting the message to release digestive enzymes either.
It's common for Celiacs to have damage in the duodenum when first DXed. Taking digestive enzymes helps your inflamed system break down your foods.
I took over the counter ones, but was put on much stronger RX ones after testing. As the duodenum heals, many times the gallbladder and pancreas function improve because they start getting the CCK signals.

Push for endoscope IMHO. Keep taking the probiotics, keep a food log and omit foods you react badly to.
Look for soy, dairy, and gluten in any vitamins or supplements you take. (I found most fish oil to have soy, so I take Salmon oil. Many multi-vitamins have it too. I take a lanolin based vitamin E). Ask the GI to run blood vitamin/mineral panels if your PCP won't do it, so you know what you may need to supplement.
Try digestive enzymes. Eat smaller amounts..but eat more often. Try to get a bit of protein with every meal.
Drink plenty of water. Many of us tend to be a bit dehydrated.

I hope your tests give you the answers you need to get on the road to good health. If gluten-free, dairy free, soy free makes you feel better, stay with it. You don't need a Dr's permission to eat that way.
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#810831 Was This Glutened?

Posted by on 13 July 2012 - 01:00 PM

Not getting any reponses on the "symtoms" board so I will ask over here. My dd doesn't have intestinal symptoms at all. But last night, she left youth group at church early saying she felt like she was going to throw up. We left and she cried for 15 min. with it and never threw up or went to the bathroom. Then it went away as fast as it came on. She was perfectly fine after that and all night. This doesn't sound like most of your glutened symptoms. THey usually are bad and last longer than 15 min. We had to eat away from home for lunch and dinner but she took her entire meal with her. She didn't eat any other food. Was this gluten or a childhood tummy ache, gas? Just wondering if she is starting to have symptoms. She goes back to the doctor Tuesday so I need to know whether to mention this or is it not consistant at all with glutening!

Could maybe have been her gallbladder acting up? This can come on suddenly and pass suddenly. Can cause nausea and gas type pains. Just be aware of watching for reactions to greasy or fatty foods.
Many Celiacs have gallbladder issues. They seem to go hand in hand? I was told I needed mine removed, but I'm hanging onto it in the hopes it will heal now that I'm gluten-free. It still acts up though. :(
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