I'm Freaking Out
Posted 31 July 2011 - 06:13 PM
Posted 31 July 2011 - 06:54 PM
misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010
only YOU can prevent forest fires - smokey t. bear
have a nice day
Celiac.com - Celiac Disease Board Moderator
Posted 31 July 2011 - 06:57 PM
Wife of a wonderful, gluten intolerant DQ2/DQ2 husband!
Gluten Free home since June 2011
Posted 31 July 2011 - 07:51 PM
Posted 31 July 2011 - 08:38 PM
I started losing weight too when I went gluten free, within days. I was losing 1 - 1 1/2 pounds a day for quite a while - I was overweight, too, when I was diagnosed. By 6 months, I believe I'd already lost 40-50 pounds, without trying to diet at all. My hair started coming back in. I was not depressed for the first time ever. Insomnia went away, exhaustion went away, skin cleared up. Keeping my temper was suddenly 10 times easier than it had ever been. Aches and pains and vertigo and poor memory and clumsiness - all gone.
It's truly been stunning how much of what I thought was 'me' or 'getting older' has turned out to be gluten.
In your case...
The weight loss can be very normal. The shakes and nervousness could be gluten withdrawal.
The fevers and fluid retention...that I don't know. For me, I get both of these when I GET gluten. They go away without gluten. Something that many people get when they go gluten free is an increase in their gluten sensitivity. Some people have this happen a few months in, but some have the sensitivity level go up within days, and the reactions can change, so it could be a reaction to mild gluten contamination, perhaps.
But...I would be concerned a little with those two symptoms, potentially. Might be worth talking with a doc.
The hives - I really hope I'm wrong on this one, but that's one I can relate to. Some celiacs have other food allergies they were completely unaware of, and for whatever reason, they start becoming more of an issue after they go gluten free. The theory I heard that made sense to me was that so much of our body's energy was focused on attacking ourselves that there weren't any resources left to react to allergies much, even if our bodies would have done so normally.
For myself, I started having reactions to allergies I never knew I had, within days of going gluten-free like yourself. I started having headaches and other symptoms to other foods after about 2-3 days gluten-free, and at about 2 weeks gluten-free I ended up having breathing trouble from a food for the first time.
I was tested for food allergies and found some that way. I also ended up keeping a food journal, and that found a few other foods that seem to be problems.
So hives would be something to be paying attention to, at least.
Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease
23 years with undiagnosed sulfite sensitivity
25 years with undiagnosed mast cell activation disorder (MCAD)
Daughter: celiac and MCAD positive
Son: gluten intolerant
Father, brother: celiac positive
Posted 31 July 2011 - 09:29 PM
Congratulations on the good things....and I hope you get the negative effects worked out soon!
So if the Son sets you free, you will be free indeed.
Posted 01 August 2011 - 03:57 AM
Posted 01 August 2011 - 04:39 AM
I hope you get through the withdrawl part soon. Stay strict with the diet as if you get accidental CC it can possibly keep the withdrawl hanging in.
"I will try again tommorrow" (Mary Anne Radmacher)
celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007
Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15
Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom
Positive to Soy and Casien also Aug 2007
Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303
HLA-DQB1 Molecular analysis, Allele 2 0303
Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)
Posted 01 August 2011 - 06:26 AM
I am new here, but have been gluten free since 2007. I went through all the withdrawal issues too - sometimes when eating something unknowingly contaminated - they come back for a spell.... I had severe allergies develop after going gluten free I was put on an elimination diet - finally had blood work, and scratch testing done - 35 foods to remove. Eventually the body healed and some of the foods have been added back in. I am on a rotation diet for lifetime. Each one of us is different - each of us had different withdrawals & food intolerance/allergies coming off Gluten. Hang in there & good luck
Posted 01 August 2011 - 07:17 AM
I'm also very new - gluten free for 8 days. I WISH I had rapid weight loss. Could use the 50 lbs gone. I'm also freaky out, but for other reasons. I have a wee tad of complusive eating / binging. Have been to OA / FAA / Kay Sheppard. (Side note - I have not seen anyone mention anything about celiac and complusive eating specificly, are there any willing to say?) I have done avoid wheat/sugar/flour thing before for a while, but never able to stay with it - thinking now it was the gluten in those foods and my unwillingness etc.
Now naturopath has tested me and again stated I must stop gluten etc. Have twice in two years do blood work/ urine test and both times it shows intolerance to wheat / gluten / grains / dairy / eggs. (Having md do blood work, waiting for results, nervous actually that they will come back negative).
I feel clear headed, even if my body is aching (could also be the fibro... I'm a walking autoimmune disorder).
But weight loss.... clothes still tight, and afraid to weigh. And I'm heading for the gluten free processed foods, which I KNOW will not assist weight loss. This is where my complusive fear there is no food that I will be able to have. I know logically that there is LOTS of healthy good food. I just have to make it. (part of an issue especially when I'm not feeling well, and can't seem to lift a pan or stand for long and emotionally then want comfort, quick food).
I feel a bit alone in this, not in the celiac - I'm getting so much info on this site, but on the fear, and the fear that the blood shows negative and I will 'add' things in, and the fear that I won't be able to maintain staying on a celiac plan. Blessing besides this site, is my hubby is very supportive. Onward I continue..........
Posted 01 August 2011 - 07:22 AM
The gastro I consulted at the time didn't have a clue. He didn't undertand about gluten withdrawal and made a face when I brought up what my research had uncovered on the subject, here and in other reading. But once I felt comfortable that it was normal for me to be feeling this way and relaxed a bit, that seemed to be half the battle. Weight loss, for me, a big yes!!! and it's stayed off effortlessly for over a year now!
Sometimes you just have to trust that your body knows what to do, returning to a state of health. Good for you!!!!
Gluten Intolerant, Positive test, June 2010
Casein sensitivity, Positive test, June 2010
Reactive to soy, most processed foods & preservatives, June 2010
Posted 01 August 2011 - 04:11 PM
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