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Need Some Advice


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5 replies to this topic

#1 FooGirlsMom

 
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Posted 21 November 2010 - 09:29 AM

Hi all,

I have been reading a number of posts here and you all sound like a very knowledgeable group. I hope you can offer me some guidance. This will get long, so I apologize in advance :)

I don't have the ability to obtain a diagnosis (husband's employer shut down 6/30 & lost medical insurance and we make just a wee bit too much to get insurance through the state). Because Celiac's is auto-immune & is the Great Imitator, I believe I've been struggling with it in some form my entire life.

As a child I was frequently constipated. By my late teens and early 20's I couldn't figure out how I could eat so much fiber (whole wheat bread) and have such a problem. (We ate pretty healthy at my house.) I had to go to an urgent care at one point to get looked at and they kept me home from work taking laxitives & drinking copius amounts of water until it cleared.

Fast forward a few years, after our marriage and birth of our 1st child, and I'm a wreck. I have chronic fatigue, a systemic yeast problem, weight gain, and rotating insomnia and want to sleep all the time. I pray for an answer and walk into a health-food store (this was pre-Internet) and find a book called, "The Body Ecology Diet" which is a healing diet & only lets you eat millet, amaranth, quinoa and buckwheat for grains. It removed all dairy & allowed only lemons for fruits. Within 4 months I was feeling really good and over the next year would be on the diet about 8 of 12 months.

Then I learn about the Atkins Diet. Remove all grains. So I do that, and after some serious "detox" over about 2-6 weeks (intermittent days of feeling super energetic & then conversely tired with occasional headaches/migraines), I find a diet that I feel pretty good on. I can't really go past the "Induction" phase and eat any Atkins products or I feel awful. I do miss fruit and even when I cheat and eat it I feel fine. So for the next 13 of 15 years I intermittently use Atkins to control symptoms and get rid of bloating that has plagued me since my 20s.

Hormonal problems plague me intermittently my entire adult life. At about age 28, I don't have period for 4 months and they think I have cancer. No cancer. After the birth of our son, it takes me 9 years and a miscarriage to have another baby. No doctor really knows why.

To correct my health, I found that if I went on Atkins for 3 months at a time, I could feel better.

Now we've reached late summer 2008. My mom has a severe stroke. My health is good & while I have some weight to lose, I look pretty good & feel great. Over the next year my focus on her health, and not on my own, I start to deteriorate quickly. The stress (I am the only child who lives near her) is so bad that I wonder if I can cope at times. Mom almost dies 3 times. I'm 40 years old at this point and my body doesn't seem as resilient as times past. I can't seem tolerate the acidic nature of the Atkins diet (too much protein) and feel awful on it instead of better. My kidneys seem to be hurting. This is where it gets bad. I start having horrible muscles and joint pains. After a while I start thinking this is vitamin deficiency as all the symptoms fit. I start taking vitamins and cooking from scratch (can you say organic whole wheat?) and I get worse & worse. My blood pressure gets high. I am gaining weight at record speed. Sometimes I think I'm dying of a disease no one knows about. I'm feeling awful most of the time but I just keep going - I have to.

A month ago, I realized I started to suffer from symptoms of anemia and I have a friend I saw from Canada who is a diagnosed Celiac. We get to talking. I start thinking. Come home and research Celiac Disease and am shocked to realize that all this suffering is most likely Celiac. I didn't know it was auto-immune. It did feel like my body was attacking itself. New symptoms kept popping up all the time.

Here were are TODAY. I have been gluten-free for a month. It took a week of headaches and initial feelings of detox but within a week I'm feeling better. I didn't realize I'd been dairy-free the first week but when I ate a low fat gluten-free ice cream bar, I reacted with intestinal pain I'd never experienced before. The next day the inside of my stomach and intestines felt raw & hurt for 2 days. I continued to improve over the next 2 weeks. Then I tried eating gluten-free bread. (Udi's mostly) It was ok but I noticed I started to develop diarrhea. The amount of bread seemed to make a difference. I made bread for myself this past Friday using Jules' gluten-free flour mix and ate probably 4 slices that day -- and it was bad -- if you get my meaning.

So here are a couple of questions: I am not going to get a diagnosis. I can't unfortunately but I am committed to gluten-free because I sincerely believe I'm a Celiac with full-blown autoimmune issues. My first question is: Have you all experienced diarrhea when eating gluten-free bread or bread-products? I'm wondering if my system is just too weak to handle the gums (xanthan, guar etc) and do they cause GI problems for a lot of people? (My husband even reacted to my home made gluten-free bread?) And secondly, do symptoms get WORSE as your body gets better? My guess is that if my intestines are damaged at this point, it will take time to heal. How long has it taken you all to really see symptom-free improvement? Do you give up grains to heal? I'm intersted in what you've had to do to successfully recover?

I need to sift through your responses and keep them in mind to make decisions as I go since I'm going to be going this alone. I am convinced, however, that I probably have other food allergies (at least right now while I'm still not healed).

I appreciate any and all advice & help you can give.

FooGirlsMom -- nearly 43 and ready to get well...
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When I saw this photo, I thought it truly represented my life prior to being gluten-free. It was like being rooted in place trying to survive a Category 5. Now that I am gluten-free, I feel like I just might make it :)

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#2 cassP

 
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Posted 21 November 2010 - 10:29 AM

you're in the right place- there's a lot of members on here with FANTASTIC advice :)

i, like u, felt relief from a lifetime of issues when i went on Atkins. you have to be careful tho- we're all different- i felt fantastic on Atkins, but my friend had to go the ER while on it- with kidney problems.
maybe you felt good on it because u eliminated gluten for the most part. you can be gluten free & free from many grains and still not get too far into "ketosis"... you could eat plenty of fruit, and some rice, and some starchy vegtables- and you could still feel great, look great, and have kidneys that feel great.

i feel fantastic on meat- but i stay away from WELL DONE Chargrilled meat- it's much harder to digest and can be carcinogenic. i also had to eliminate "Atkins products" years ago- many of the fake fats in their would give me intestinal GURGLES & "D".

i, and many others on here feel best when not indulging into too many gluten free substitutes (breads, etc)..

i'll leave you to the other members- im sure someone else can advise u on how to go about getting some tests done
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1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

#3 ar8

 
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Posted 21 November 2010 - 10:31 AM

Hi there-
Wow I am so sorry you have been through all of this and still haven't been able to find a solution. First of all, if it makes you feel any better, I am not so sure that having money to pay for a doctor would necessarily clear your issues up anyway-- often doctors aren't able to diagnose gluten related issues as readily as one might expect, unless you had straight out, black and white celiac disease which may not be the case. I do think that if Celiac disease were you only issue that you would not react so severely to the gluten free breads, unless your intestinal state were that compromised, or you had overgrowth of bad bacteria, which is common in celiacs. Have you tried probiotics? I know that people on this board are often against activia, but it's helped me-- maybe try the sugar free kind if you have issues with sugars and starches not digesting well?? I'd think it'd be best to hold off on any starchy and sugary foods until well healed, gluten free or not.

But it's clear that you feel better on a gluten free diet, too. So really, that's all that matters-- why don't you stick to meat, fish, fowl fruit and veggies for a good few months? If it's celiac, another autoimmune disorder, or really ANY health problem whatsoever, such a diet will work tremendously to your advantage. I'm sorry this whole thing hasn't been easier for you. It's interesting to note, though, that you yourself said something about feeling good on a diet of atkins plus fruit, which is basically what this would be :-) Also, you might want to read Breaking the Vicious Cycle, by Elaine Gottschall. It is a diet that recommends cutting out any "disaccharides." I think it's a really healthy diet and it is especially good for celiacs who are just beginning to heal. However some of the things she says you have to take with a grain of salt (for ex., that celiac can be "cured" by following her diet for a long period of time)-- she's a little outdated, but nonetheless i'd think this would be a GREAT diet for you. Best of luck in your journey.
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#4 GFinDC

 
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Posted 21 November 2010 - 10:32 AM

My first question is: Have you all experienced diarrhea when eating gluten-free bread or bread-products?

Sure, with some of them. I react to soy and dairy and nightshades, so those ones are a problem for me. So I don't eat them. Some people have problems with tapioca flour too, or eggs or ____ that you can fill in the blank.

I'm wondering if my system is just too weak to handle the gums (xanthan, guar etc) and do they cause GI problems for a lot of people? (My husband even reacted to my home made gluten-free bread?)

Yes, some people here report having trouble with xanthan gum. I don't think that is a lot of the people, but if it is you that's what matters.

And secondly, do symptoms get WORSE as your body gets better?

Many people seem to get more sensitive and have stronger reactions to small amounts of gluten not long after going gluten-free.


My guess is that if my intestines are damaged at this point, it will take time to heal. How long has it taken you all to really see symptom-free improvement?

It varies for everyone. I had some improvements within a week. But developed additional intolerances that took me a good 3 years to get over. But everyone has a different row to hoe as they say.

Do you give up grains to heal?

I went on the paleo diet for a while, but ended up going back to a limited grains diet. It didn't seem to make any big difference for me to be completely grain free or not.

I'm interested in what you've had to do to successfully recover?

I gave up the things in my signature.

I also started taking sub-lingual B-12, vitamin D, some calcium here and there.

Sounds to me like you are on the right track, and most likely are celiac or maybe NCGI (non-celaic gluten intolerant). Either way, a doctors diagnosis doesn't do a whole lor for us. The treatment is the same regardless, go on the gluten-free diet and get healthier!

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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#5 WheatChef

 
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Posted 21 November 2010 - 03:15 PM

The problem with atkins diet is a lot of people end up going overboard on their protein intake leading potentially to too much gluconeogenesis instead of full on ketosis. Ideally you want to eat between 65-70% of your energy from fats but a lot of those atkins products are quite high on protein and carbs leading to your body supplementing the carb burning by breaking down proteins in order to make additional carbs thus inducing acidosis and causing havoc on your kidneys. Additionally the induction phase can be slightly dehydrating if you are in the appropriate fat consumption range while your body makes the transition, if that's the case then you just simply drink more water.

As far as your symptoms go, you've certainly covered the major warning signs of celiac disease. Since you are in the just the first month of the diet however you're probably best off avoiding all grains for now, especially any and every gluten-free baked good product. Gluten is THE integral component of baked goods so in order to mimic the qualities you're used to in a baked good it requires the use of a lot of new ingredients, additives, stabilizers that you're not used to consuming in large scale. These new products can cause additional digestive distress which can aggravate the already delicate healing you're intestines and body are attempting. Additionally in the first few months of the gluten-free diet your body will be going through a lot of changes while it tries to correct many deficiency and hormonal imbalances that it's been running on for potentially years due to the damage. While it tries to correct these issues it is easily possible for your body to react to foods you've never reacted to before as well as randomly reacting to nothing at all! This can last for a number of months depending on how severe the damage was in each person's individual case, I didn't get fully past this phase until about 6-7 months into the diet. During that time however I was still noticing markedly significant improvements in various issues related to health in a number of my major organs. There were a few different health issues that did persist until I finally gave up all grains aside from white rice.
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Receiving a qualified diagnosis of Irritable Bowel Syndrome is as useful as a Psychiatrist giving you a diagnosis of "Doesn't Think Right".

#6 FooGirlsMom

 
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Posted 21 November 2010 - 04:59 PM

Hi Everybody,

I want to thank you for all the thoughtful responses and ideas you gave. They really did help.

I don't know how to explain how comforting it is, after 18 years of struggling with this "beast" (that's what I call it) and over the past year (since not being on Atkins anymore) developing symptoms by the week, to be able to sit down and discuss these issues with people battling the same thing in various forms.

Listening to you all, and doing some more reading, I'm understanding that I'm going to be allergic to or symptomatic on, foods that may not have caused trouble in the past. I may be able to eat them again one day after my body heals. This makes sense to me because there are things like dairy that in small qtys never bothered me. I had an attack on 1 small ice cream pop the size of a popsicle. That was new! I think I may be allergic to soy. I thought about what a couple of you said and I was eating soy yogurt (forgot that!) on the days I had D and that was the same days I was eating the gluten-free breads. So it may not be the bread. I cut out the soy today and bought Earth Balance soy-free spread & ate the gluten-free bread. Nothing so far. So we'll see. No tummy rumbling...no running for the loo. :)

You really don't know how much I appreciate your replies. No one, not even doctor after doctor I went to for years (and finally gave up) could get it. I was told everything from "stress" (yeah no kidding - illness stresses you out when you can't live your life), to "candida" to "too much salt (high BP), to who knows what.

I think some of you are very right. Even if I had health insurance right now, getting a diagnosis (for me) is not hugely important and it can be hard to get (I'm reading that all over the Web). The reality is...my whole medical history screams gluten intolerance. I don't need someone to tell me that when within ONE week of going gluten-free this time (with the worst symptoms in 18 years) my pain diminished 60-70% and I felt human again. My husband is floored that it's something so "simple" as what I can't eat. My friends are floored too. When I've struggled with weight off and on (took it off low carbing) they have said, "I don't know how you are overweight. I see what you eat. I see your cupboards. You eat healthier than anyone I've ever seen and you don't sit around all day. Why are you overweight?" Yeah, good question. 3 weeks into the diet I've lost an entire size. My distended bloated tummy & face are normal. I look like ME again. I have real hope for the first time in years.

Thank everyone.

FooGirlsMom
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When I saw this photo, I thought it truly represented my life prior to being gluten-free. It was like being rooted in place trying to survive a Category 5. Now that I am gluten-free, I feel like I just might make it :)




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