Losing weight

Does anyone have a problem with unintentional weight loss? I have lost 11 lbs in less than a yr while still eating quite a lot of food and supplements. I need a good diet to help me gain weight that could be adapted to all my medical issues. A nutritional consult is not covered under my insurance. It seems everything I eat has some negative affect on me. Chewing hurts my jaw and face, carbs affect my reactive hypoglycemia, I am lactose intolerant, have IBS, and am allergic to citrus and acidy foods. About the only thing that seems to help is drinking Enterex and I have drank enough I'm sick of it! Ensure messes with my sugar levels. HELP!!!

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7 replies. Join the discussion

You will fit right in on a current thread about exactly this topic. Many of us struggle with this...doctors have tried to get my weight up for 4 decades...no success yet....

Here's the thread: http://www.inspire.com/groups/ehlers-danlos-national-foundation/discussion/ weight-loss-70/

Take care...

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Thanks, SlapASmileOn! I hadn't seen that discussion yet. When I was 22 I weighed 133. When I was in my mid 20's until about 40 I weighed 122. The last 15 years I have struggled much of the time to weigh 100. I suppose I should be grateful since I don't hurt as bad as if I had to carry a lot of weight around, but I have found people are seldom happy with whatever state we find ourselves in. ; ) I kept thinking when I hit middle age, the pounds would pile on, but I'm still waiting.....My mother was chubby, my sisters had lots of problems being heavy. Most of my dad's side of the family was heavy as well. I only had one brother who was always thin like me, so don't know where this came from....

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I had numerous bouts of rapid weight loss after a lifetime of being underweight. Adrenal insufficiency was my worst cause(lose 4 pounds in 12 hours/40 pounds in 2 months). Delayed onset (IgG ) food allergies was another. Ensure or any dairy caused the problem to be worse. Polycose(sugar from corn) helped the hypoglycemia. Amazingly I am not allergic to corn. I now am obese for the last year for unknown reasons(50 pound wt gain in 2 years)??

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Hi HeidiFL! I hadn't thought about the adrenal insuffiency causing weight loss! I have had problems with this for years! I am thinking it is possibly linked to the Rathke's cyst putting pressure on my pituitary gland. The radiologist suggested that testing be done on the pituitary, but the doctor hasn't requested anything yet. Do you think this could be a possibility? I also have a lot of allergies but hadn't considered this as a cause either. Thanks for your thoughts!

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I think my adrenal insufficiency is from the pituitary (primary) or perhaps from trauma(horseback riding falls) and whimpy support of the brain. I had a number of bad concussions. The great thing about it is that a little steroid made me almost normal and I was able to work for years. Now the other EDS problems have taken over. Good luck with getting testing. I hope you have a good doc. Thyroid issues are common with even non EDSers. I get low TSH with low T4 which hints that I also have a mild pituitary cause of hypothyroid. My Mri's were all normal despite the abnormal labs. There may be a circulation?pressure issue that interfers with the communication between the hypothalmus and pituitary..This is just my personal opinion. It took me years to figure out the difference between POTS symptoms and adrenal insufficiency symptoms. Allergies triggered them both; steroids helped.

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Millie,
I'm the one who started the other thread. Just wanted to say that I feel your pain! I am down to 90 pounds now and am 5 feet 8 inches. Although I have always been very thin (except when pregnant) this is a bit ridiculous! Mostly I am worried that the weight loss is a symptom of something else. If my only symptom is weight loss I will live with it if I am essentially healthy.
My only idea for what could have made me lose 8 or 10 pounds in just a few months is stress. We are moving soon, and it has been a nightmare (husband was transferred and I am really sad about going).
You can add me as a friend if you would like to compare notes!
Take care,
Jennifer

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Millie 57,
My white count is low has been for years ( ever since my GI issues started) my doctor dismissed it . My eosinophils are high but the new allergist I started seeing did blood work and said I have no allerys even though skin tests show 10 food and 36 air born. I also get very sick when I eat any of those foods. I am very thin now have to were childerns cloths . That was not the norm for we used to be size 18 and 187 pound . After GI issues started just kept on losing wieght got down to 107 and where a kids large even 00 hangs off we so had to go to Jr. but now that is lose so moved to kids. I do have a chiari and one doc said it was sitting on vagus nevre. I think it has some thing to do with the white blood count but don't know what kind of doc would deal with that.

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