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#1mommy

Questions About Celiacs

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I was diagnosed with celiacs in September. I have been sticking to the diet, but I don't feel any better. I still have the same pain and the "runs". I have not gained any weight back, infact I think I am loosing more. I recently have had no energy, almost to the point of feeling like I am in a daze all the time. Wow long does it take to feel better? I was diagnosed with blood tests and biopsy. Also has anyone else had insurance issues. My insurance will not cover a dietitian. I found that out after the Dr. sent me to one. The insurance says that they do not list that as being medically necessary for treatemnt. Is it just me or is that stupid? It really made me mad.

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Welcome to the board.

I'm sorry to hear you're not getting better. Make sure that you've eliminated all sources of wheat, barley, rye, and oats - including hidden sources or non-obvious sources (so you have to read *all* labels). Also make sure that you're not getting contaminated in your own kitchen by shared toasters, counters, preparation utensils, etc. And that you're not getting contaminated in the preparation of your food (at home or in a restaurant). And that your vitamins, medicines, lotions, and makeup are gluten free as well.

As for the dietician - I wouldn't sweat it. Most of them aren't really up to date on the diet anyway, so your chances of finding a good one are hit or miss. Use the internet; read, read, and read some more; and ask as many questions as you have. This community is probably more helpful than most dieticians. :) (No offense even to the good dieticians out there, but we're thousands strong! :D )


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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Some people notice improvements within several weeks, on average most people probably feel better within 3-4 months, and others, like myself need longer. I'm sorry that you are still having problems. I can relate. I was quite ill with celiac disease for several months before my diagnosis and up until about 6 months after I started the gluten-free diet. I would get explosive diarrhea almost daily, with constant gas, and bloating. On top of all that I had by times, extreme fatigue, brain fog, a lack of energy, and joint pains. I was also underweight for a while and looked anorexic. I felt so weak, like I would pass out sometimes. After 10 months on the diet, I realized I was eating chips that were contaminated, when I cut those out of my diet and got more strict with dairy, I started feeling a lot better. After 1 year on the diet, I felt much better.


Carrie Faith

Diagnosed with Celiac Disease in March 2004

Postitive tTg Blood Test, December 2003

Positive Biopsy, March 3, 2004

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I have been reading everything. I was told it could take up to 4 months for the damage to my intestine to heal. He mentioned nutritional injections if my nutrient levels did not improve. I dont want to do that if I dont have to. I not to much underweight. I weigh about 98lbs and am 5'5". I have a very small frame. The most I ever weighed was 130lbs when I was preg with my daughter. I am thinking of going for a fallow up to see what the Dr. thinks.

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Hi,

We are all different but I feel there are factors that can contribute to a faster recovery time. I was pretty ill when diagnosed in May 05. I feel I recovered extremely fast. Symptoms went away in a few days "never" to return. It took me about 10 weeks to heal and gain back enough weight to get active and start to feel normal again. That said these were my personal changes that I am certain were most important. First and most important was the decision by my wife and I to make our kitchen 100% gluten free from day one. I know in a lot of cases this is not an option. I wanted to be sure I was not accidentally getting "glutened" from some source other than eating. This worked as I have not had any of my previous symptoms. To me it was a small price to pay. I do not "handle" gluten at all! In the beginning I did not eat any meals outside the home. Now I eat out at least once a week but only after having checked out the establishment throughly. Once again I have been fortunate not to have had any accidents. Buying and preparing naturally gluten free food is second nature now. I don't think of contamination or even getting glutened. I am sure one day it may happen but for now it is just business as usual. Unless you live alone it is almost impossible to do this by yourself. The support of others that live in the same household is going to be the biggest and most important factor in how well anyone does with this lifestyle change.

The comments about other potential food issues is very valid. Keeping a log starting with a basic diet may the the only way one can elimininate things they are not sure about.

Finally the dietitian issue is hit or miss. I had a good one but that is not always the case. You can learn pretty much everything you need asking questions on this board. Hope this helps.

Tom

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I have been reading everything. I was told it could take up to 4 months for the damage to my intestine to heal. He mentioned nutritional injections if my nutrient levels did not improve. I dont want to do that if I dont have to. I not to much underweight. I weigh about 98lbs and am 5'5". I have a very small frame. The most I ever weighed was 130lbs when I was preg with my daughter. I am thinking of going for a fallow up to see what the Dr. thinks.

You know, that weight would seriously worry me. I'm 5'2", and 115 is too thin for me - I start to look unpleasantly thin at that weight. Given than varying chest sizes (in women) can add or subtract 10 - 20 pounds, I would still be very concerned about that weight.

I checked out some Ideal weight calculators ... here's the site, if you're interested: http://www.halls.md/ideal-weight/body.htm.

That being said, a possible contributor to your continuing weight loss is your diet. Assuming that you have removed all of the gluten from your diet, what have you replaced it with? There are lots of naturally gluten free foods that are available, but when you are first diagnosed, it sometimes seems easier just to "stop" eating gluten-filled foods, instead of replacing them with gluten free options. For example, lots of people just skip lunch because they can't find a gluten free bread that works well for sandwiches.

So, even though you are probably still having absorption problems (deduced because of the continuing diarhea), you need to sit down and take a look at your dietary intake. (Perhaps this is why you wanted to see a dietician?) Think of all the things you can still eat . .. eggs, meats, fruits, veggies, soups (from scratch - no flour), starches (rice, potatoes, corn, etc.). Then come up with a 1 or 2 week menu plan - breakfast, lunch, and dinner. (Lunch is easier if you just make enough dinner so that you can eat re-heated leftovers for lunch the next day.) Try to work in the recommended fruits and vegetables so you are at least ingesting enough nutrients . . . even if many of them are passing right through. (In fact, you probably need to have a "higher than normal" caloric intake, just because of the malabsorption issues.) Then stick with the plan.

Also, as far as the dietician goes, I'd probably send a letter to the isurance company saying that your visit to the dietician was recommended by your primary care physician and that your lawyer will be contacting them concerning the payment of the claim. See if that will loosen their pockets any.

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Hi, and welcome to this board. People with villi damage cannot digest dairy. The reason is, that the enzyme lactase that is needed for digesting dairy is produced by the tips of the villi. But your biopsy showed that those tips are nonexistent right now.

You need to eliminate dairy for now (you might be able to have it again after about six months), it could be what is stopping you from getting better.

Also, as others said, you may need to really make sure you've eliminated all sources of gluten. Do you use soy sauce? Most have wheat in them, but there are gluten-free ones out there. Have you replaced all personal care products (shampoo, conditioner, lipstick, toothpaste, makeup, soap, lotion, vitamins etc.) that contain gluten (like wheat germ oil, barley extract, oat brain) with gluten-free ones? Do you have your own toaster? Do you have scratched non-stick cookware that needs replacing? You also can't use a plastic colander that has been used for gluteny pasta for gluten-free pasta. It is not possible to clean it well enough to be safe.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Thank you for all the help. One other problem is that I can not stand the taste of meat. I eat chicken, turkey and seafood. I have foud a local store that has quite a bit of gluten free things. I found one bread recipie that is ok. and have found a good pasta. My diet before was mostly pasta and bread, so this has been really hard. I eat a lot of salad expecally if we go out to eat. As far as the insurance company. I have tryed that. My Dr. sent them information about why a dietitian was necessary and I threatened to contact a lawyer, but the refuse to pay. It is not a real big deal I just think that it is stupid for them to say that a dietitian is not necessary when the only way to control the disease id diet. The dietitian was not real helpful anyway, but it is just the point.

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