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Help! I'm New At This


whimsygirl

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whimsygirl Newbie
:huh: I've not been "diagnosed" yet with any positive tests. But, I have been going to Dr. appts. from losing 40 lbs. in a matter of 9 months and have all the symptoms or gluten allergy. I had an upper GI for ulcers and whatever else they test for on those and it came back normal. The GI Dr. said I could have celiac disease but then went on to other conversation and finally concluded maybe it was IBS. I then asked what the other thing was he said I could have and he couldn't remember. My Gyn. actually suggested celiac disease because he has a relative with it. I just started looking into it and realized it matched. I've been avoiding gluten as much as possible and feel quite a bit better. But let me say I'm at a lose for what to eat sometimes, especially for lunch. I've had Tostidos and salsa for three days for lunch becausse everything down to the Campbell's Chunky vegatable soup I used to eat has gluten in it. Any advice on good quick lunches for a newby? And what I should do next? Should I go back to the GI Dr. and have him go in for another endoscopy and test for celiac disease? I'm also reading from other messages on the board here that it looks like I should keep eating the gluten until they test me for it or it could give me a false result from avoiding it. But, It's hard to keep eating stuff that I know are going to make me feel sooo yucky when I have felt so yucky for soo long! :( What is your advice?

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Guest barbara3675

Rather than messing with the doctors you have there, you could try testing with Enterolab. I did that and now I eat gluten-free/cf and am comfortable all the time. In the process of testing I found that I have the gene for celiac as I did the full testing and also intolerance to cow's milk. It was worth every dime I paid. Just go to www.enterolab.com and follow the instuctions. The test is non-invasive, the instructions are easily followed and they get the results back to you in a decent amount of time. They ask for 3-4 weeks, but in my case it was a day short of two weeks. The results come via email. You don't have to stop eating gluten-free either. Here is a site to go to that you can print a very long list of things to buy at the grocery store that are gluten-free: www.napervillegi.com/GFfoodlist/pdf The last time that I copied this off, it was 50 pages!!!!!!!!! I keep a copy at home and one in the car. Healthy Choice Split Pea, Bean w/ham, Country Vegetable and Chicken w/rice are all gluten-free and very good. If you are, in fact, gluten intolerant, you will feel so much better when you get gluten out of your system. It is worth the effort. Stick with it.

Barbara

KaitiUSA Enthusiast

Amy's has microwavable gluten-free Mac and cheese and gluten-free Vegatable Lasagna for quick meals. Amy's also has gluten-free pizza that is actually good. Amys also has soups that are gluten-free. Also Thai kitchen brands of soup are good. There are also brands of chips, candy bars, lunch meats etc that are good for on the go. There is alot we can have its just a matter of finding the right brand you will get used to it. Good luck

If you realize you are feeling better you could just stick with the diet.

Whatever makes you feel better stick with it it's worth it

:D

whimsygirl Newbie

Thank you so much for the reply!!! :rolleyes: I have been so overwhelmed with the gluten thing. I started looking at the ingredients in the foods in my pantry and it is in about everything. It is going to be such a big change, for myself and my family! ( I'm married and have 3 children) And let me tell you these are some gluten eatin' people!! :o I have baked all my life and do it all the time and they really enjoy it so I am now trying to decide if I should just keep baking for them or change everything to gluten free products. I have my curiosities on whether any of my children are affected by gluten. My 12 y.o. has always been very thin, but otherwise healthy, but recently diagnosed with ADD and he complains a lot about feeling nauseous or not hungry in the last six months. My 7 y. o. pretty healthy, asthma (it doesn't bother him much) , and eczema and also somewhat thin. My 4 y. o. has had constipation problems since about 18 months and complains on and off of tummy aches, which I used to just think had only to do with her constipation. Now I'm wondering if the constipation is just a side effect of celiac disease. Any thoughts? Anyway, thanks for any input I'm just so new at all this and this is the first place I've found to get any answers.

billfl Newbie

The 'Progresso" brand of soup has several varieties that are gluten free, for example "Creamy Chicken w/ Wild Rice". They are very good about listing all ingredients, including soy and milk products, in large letters at the end of the ingredients list.

Guest Viola

While you are still in the 'deciding' stage of whether to bake gluten products or not, here is a couple of things to consider.

Flour .. whether it be gluten free or not, flies all over everything, including up your nostrils, lips etc. It quite literally coats everything from your counters to your gluten free toaster, unless it is covered. I decided years ago not to have gluten flour in the house. A bakery does the baking for my husband. Then all I have to watch for is his goody crumbs :o You also have to watch that you don't bake gluten free products in the same pans unless you are certain that it is clean of all gluten residue.

When company comes to stay 'with campers and trailers' they quite often will mix up a cake or something for my husband in the trailer, then bring it in here to bake. My poor husband 'who is always trying to loose weight' is considered so neglected :lol:

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    • Russ H
      I used to react very badly to milk - much worse than to gluten and I was always worried about exposure. Any diary product would make me extremely ill and put me out of action for 5 days or so. I would have watery and bloody diarrhoea, bloating, malaise and be unable to eat. If I recall correctly, it was about a year after being diagnosed with coeliac disease and going on a strict gluten free diet that I accidentally consumed dairy products and didn't react. From then on, I have been fine with diary. 
    • Jane02
      Sorry, I just realized how old this thread is and only read the initial post from 2021. I'll have to catch up on the comments in this thread. 
    • Jane02
      Sorry to hear you're going through such a hard time. It would be worth looking into MCAS/histamine issues and also Long Covid. Perhaps there is something occurring in addition to celiac disease. It would be worth ruling out micronutrient deficiencies such as the b vitamins (B12, folate, B1, etc), vit D, and ferritin (iron stores). 
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      This sounds very similar to the neuropathic pain I experienced with type two diabetes.  Gloves and boots pattern of neuropathy is common with deficiencies in Cobalamine B12 (especially the pain in the big toe), Niacin B3, and Pyridoxine B6.  These are vitamins frequently found to be low in people with pre-diabetes and diabetes.  Remember that blood tests for vitamin levels is terribly inaccurate.  You can have vitamin deficiencies before there are any changes in blood levels.  You can have "normal" serum levels, but be deficient inside organs and tissues where the vitamins are actually utilized.  The blood is a transportation system, moving vitamins absorbed in the intestines to organs and tissues.  Just because there's trucks on the highway doesn't mean that the warehouses are full.  The body will drain organs and tissues of their stored vitamins and send them via the bloodstream to important organs like the brain and heart.  Meanwhile, the organs and tissues are depleted and function less well.   Eating a diet high in simple carbohydrates can spike blood sugar after meals.  Eating a diet high in carbohydrates consistently over time can cause worsening of symptoms.  Thiamine and other B vitamins like Niacin B3 and Pyridoxine B6, (which I noticed you are not supplementing), are needed to turn carbs, proteins and fats into energy for the body to use.  Alcohol consumption can lower blood sugar levels, and hence, alleviate the neuropathic pain.  Alcohol destroys many B vitamins, especially Pyridoxine, Thiamine and Niacin.  With alcohol consumption, blood glucose is turned into fat, stored in the liver or abdomen, then burned for fuel, thus lowering blood glucose levels.  With the cessation of alcohol and continued high carb diet, the blood glucose levels rise again over time, resulting in worsening neuropathy.   Heavy exercise can also further delete B vitamins.  Thiamine and Niacin work in balance with each other.  Sort of like a teeter-totter, thiamine is used to produce energy and Niacin is then used to reset the cycle for thiamine one used again to produce energy.  If there's no Niacin, then the energy production cycle can't reset.  Niacin is important in regulating electrolytes for nerve impulse conduction.  Electrolyte imbalance can cause neuropathic pain.   Talk to your doctors about testing for Type Two diabetes or pre-diabetes beyond an A1C test since alcohol consumption can lower A1C giving inaccurate results. Talk to your doctors about supplementing with ALL eight B vitamins, and correcting deficiencies in Pyridoxine, Niacin, and B12.  Hope this helps! Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ P. S.  Get checked for Vitamin C deficiency, aka Scurvy.  People with Diabetes and those who consume alcohol are often low in Vitamin C which can contribute to peripheral neuropathy.
    • Scott Adams
      I’m really sorry you’re dealing with this—chronic neuropathic or nociplastic pain can be incredibly frustrating, especially when testing shows no nerve damage. It’s important to clarify for readers that this type of central sensitization pain is not the same thing as ongoing gluten exposure, particularly when labs, biopsy, and nutritional status are normal. A stocking/glove pattern with normal nerve density points toward a pain-processing disorder rather than active celiac-related injury. Alcohol temporarily dampening symptoms likely reflects its central nervous system depressant effects, not treatment of an underlying gluten issue—and high-dose alcohol is dangerous and not a safe or sustainable strategy. Seeing a pain specialist is absolutely the right next step, and we encourage members to work closely with neurology and pain management rather than assuming hidden gluten exposure when objective testing does not support it.
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