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New To Gluten-Free Diet - My Story And A Few Questions


GFchic12

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GFchic12 Newbie

i've suffered with constipation most of my life, but didn't have any other issues until Nov 2010 when I got food poisoning. i started to feel a bit "off" (never empty, a bit heavy) but didn't realize until March that it was BLOAT, bloat that never went away and kept getting worse. I began a food diary to see if there was a correlation between what i was eating and my symptoms... took 6 months to realize i was also developing some strong food allergies (which i'd never had before). certain foods (nuts, shrimp, sesame, etc) closed up my throat, other foods (honey, ginger, eggs, tomatoes, etc) gave me body-wide hives/spots and extreme bloat. but no matter what i cut out, that heavy, 3-month pregnant look never went away.

(and as i work out 5 days a week and eat right anyways (i have an ED history) -the feeling of always being huge and swollen, but still hungry was maddening!)

i went to see a Gastro about a year ago, she ran a bunch of tests (celiac came back negative), endoscopy/colonoscopy showed extreme constipation, gastritis, hemorrhoids, duodenal ulcers, and melanosis coli (black colon from laxative abuse). we did a breath test and stool test to check for bacteria (both came back negative) and a bioposy of my stomach to rule out H Pylori. at this point, my diet consisted of about 12 items and in spite of that my food allergies were getting worse and the bloat never improved. she threw a lot of GERD type drugs at me, and then threw her hands up in the air and told me my problem was Mental (at which point I asked if she was Mental). then i went home and cried, i felt so ill, my body wasn't responding to anything and i just wanted an answer as to what was going on!!

a month ago i went to a new Gastro to get a second opinion. he told me (Bless him!) that i wasn't mental, that my problems were real but Functional (meaning everything technically *worked* but the way in which my digestive system was working was flawed). he ordered a Transit Test (i drank 2 massive cups of Barium and they watched how long it took to go from my stomach to my intestine) and an abdominal X-ray (to see what was swollen on a day when I felt particularly awful).

In the meantime I started researching Celiac Disease (my grandfather has it) b/c after lunch one day (where i had some bread) i started to feel especially AWFUL And i realized that although i tried not to eat many carbs on the days that i did (breading on sweet potato fries, oat bran, etc) i felt a lot worse. and after doing some research, i realize that i have almost EVERY SYMPTOM of Celiac Disease (pale sores in mouth, itchy rash on scalp/legs/torso that won't heal, tingling nerves in fingers and toes, extreme bloating, FATIGUE, muscle weakness, foul smelling stools, oily stools, easy bruising, big appetite, etc...).

i started a Gluten Free diet about a week ago (which knocks me down to being about to eat about 5 foods as i'm allergic to all the nuts/eggs/sesame oil that are used in Gluten Free products)... also have a fructose sensitivity, so i can't eat much fruit. i don't smoke or drink and i continue to work out but i'm just so exhausted.... and yesterday the bloat was as bad as it's been in awhile. i know i'm brand new to this (the Gastro wants to test me for Celiac again, but he told me I'd have to carbo load and i'm just not willing to do it. it makes me so sick and i break out like crazy! not worth it!!)----but is it possible some symptoms get worse before they get better?? how long does it take to really start to feel normal again?

if anyone here has crazy food allergies, did any of those get better after you were off of Gluten for awhile? but mostly will this awful awful bloat get better??

Thank you so much, I really appreciate any answers~


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Tree03 Rookie

Hi there....

I'm a newbie here so I can't add too much but I'm always reading and am learning a ton from other posts. I don't have the food allergies like you do, but I have been completely gluten-free for about 5 weeks now. The first 2 weeks were the worst for me...everyone is different though. I had really bad withdrawal symptoms....bad headaches and moodiness...lol. For me, about the 4th week I really started to notice a big difference in my tummy issues. I no longer had the pain, gassy feeling or poop issues.

Stick with it....it really does make a difference. It is hard adjusting and it must be really hard with all your food allergies!

Keep posting and I'm sure the veterans will offer some great advice too :)

Theresa

GFchic12 Newbie

Hi there....

I'm a newbie here so I can't add too much but I'm always reading and am learning a ton from other posts. I don't have the food allergies like you do, but I have been completely gluten-free for about 5 weeks now. The first 2 weeks were the worst for me...everyone is different though. I had really bad withdrawal symptoms....bad headaches and moodiness...lol. For me, about the 4th week I really started to notice a big difference in my tummy issues. I no longer had the pain, gassy feeling or poop issues.

Stick with it....it really does make a difference. It is hard adjusting and it must be really hard with all your food allergies!

Keep posting and I'm sure the veterans will offer some great advice too :)

Theresa

thank you so much, i really appreciate the reply!

i'm glad to hear (in an ironic sort of way) that the first few weeks were rough for you too... i was disappointed to feel worse (vs. better) once i finally realized what was going on! hopefully the next month will go quickly... thank you again!

RiceGuy Collaborator

As was stated, stick with it. It took six months before I noticed any real difference. And even longer before appreciable improvement. Ironically, I didn't notice any bloating until after having been completely gluten-free for quite some time. Best I've been able to do with it is reduce it somewhat, with a digestive enzyme supplement. Do choose carefully, as many are not gluten-free, even when claimed to be. Watch out for enzymes derived from barley, such as maltose or malt diastase. The enzymes derived from microbial sources can withstand the acidity of the stomach, thus can make it to the small intestine intact.

I was also very fatigued. Supplements have helped there as well. Though we're all different, so what helps me might not be what helps you. Anyway, I've found methylcobalamin (a specific form of B12) to be very helpful, along with a co-enzyme B-complex, and a multivitamin/mineral formula. Magnesium can also help with the tingling, fatigue, muscle weakness, and a number of other things you've mentioned. To address the easy bruising, vitamin C, vitamin K2, biotin, folic acid, vitamin D3, and rutin may help. Still others can include vitamins A and E.

How are your finger nails? Often times, nutritional deficiencies manifest in problems with nail health. The tips of the fingers can also provide some clues.

mamaw Community Regular

Good advice above... I would think a total blood work-up is in order as well...VitD, B-12, calicum, thyroid, A1C, glucose to name a few.. Your blood can give great insight...Also do the total celiac panel...look up salba seeds a good product...

I too suffwer from theBIG C .. No issueshtere just chronic C...It isbecoming very common..

Allergeries are just that & they can be treated ..

blessings

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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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