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Feeling Worse On gluten-free Diet

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I am coming up to the 2 week mark on my glute-free diet. I have been extremely careful about accidentally consuming gluten. I am, however, feeling considerably worse than I ever did while consuming gluten. I did not really have any major symptoms prior to diagnosis but now my stomach hurts all the time, is bloated and I feel SO TIRED. Has anyone else experienced this, and how long does it last? I would have thought two weeks would have been long enough for my body to get used to a new diet but maybe not.

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I am coming up to the 2 week mark on my glute-free diet. I have been extremely careful about accidentally consuming gluten. I am, however, feeling considerably worse than I ever did while consuming gluten. I did not really have any major symptoms prior to diagnosis but now my stomach hurts all the time, is bloated and I feel SO TIRED. Has anyone else experienced this, and how long does it last? I would have thought two weeks would have been long enough for my body to get used to a new diet but maybe not.

Hang in there. It took almost 2 months for me to really feel better. I thought I was being careful in the beginning, but realized I wasn't. For instance, I was using an older bottle of Sam's Club ibuprophen which contained gluten in the starch. The new bottle I had did not. I was taking a generic lactaid, it had gluten. In the beginning the learning curve is so steep. Even if you are positive you are not getting gluten, it still may take more time for you to start to heal, especially if you have been misdiagnosed for awhile. You may also need to eliminate dairy for awhile if you haven't. The tips of the vili is where the lactose is broken down, if yours are damaged you maybe lactose intolerant for awhile. Keep us posted {{Hugs}}

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Thanks for the support. Maybe it's stress that is affecting me - my expectations at the beginning were that I would suddenly feel on top of the world, and, of course, that did not happen. Indigestion, tiredness and stomach pain was not what I was expecting! In fact, the more I think about it, stress probably does play a huge part here - I am the mother of three children and the impact of this diet has been at times quite overwhelming. Sorry for the vent, but thanks for listening.

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Vent away! We all need to do it sometimes. When you vent here, we understand. I would also ask about your dairy consumption. You may need to let it go for awhile.

The advice to check for hidden gluten is a good one. It can really hide, you know? Do you still use flour in your house? It could be getting to you if you breathe it or touch it. Supplements can have hidden gluten. It's hard to know but you could start eliminating things you use one at a time and see if you find any relief. Hope you feel better soon!

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Hang in there. I'm having the same problem. I've been gluten free going on 5 weeks and I will feel horrible for a few days then have one good day, then back to horrible. Definetly be VERY careful and check EVERY label. I am still missing things as little as they are they really do make a huge difference. Its going to take some time, so try to be patient and its going to get better.

Alot of my symptoms now feel worse than when i was eating gluten and its so discouraging. I am trying to relax and remind myself that this is going to get better and just to wait. :-)

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My 2 week mark was horrible. I felt terrible. I could barely do anything as I was extremely exhausted and having alot of stomach pains that I hadnt had before. I am at the 5 week mark and feel wonderful. It is amazing how much better I feel than I have in years. Hang in there!!

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Hi,

Here are a couple of articles to read that may explain what you're going through.

.

They say it always gets worse before it gets better, these will be a real eye opener!

.

Adverse Reactions to starting a Gluten Free Diet

.

Opiate Withdrawal from Gluten and Casein

.

Best Regards,

David

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Thanks so much to everyone who responded. I was beginning to think Iw as going crazy. I'm just beginning week three gluten-free and some of the symptoms have subsided. Brain fog and tiredness are still with me, but I'm putting those down to stress and having to deal with the complications of this new diet. Thanks for all the support.

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Thanks very much for posting that link. I've printed it out to take with me to my doctor's appt. on Tuesday. I found this site by googling almost the exact title of this thread, in a final act of desperation. I'm at exactly 6 weeks since I started the GFD (for the third time in 10 years), and after reading so often how people are supposed to feel so much better after 2 weeks, I was ready to give it up tonight for the last time and write myself off as a lost cause, but the article linked above makes some sense.

I don't know how well it will go over with the doctor, but I was wondering if there were any others out there who did a tapering off of gluten rather than going cold turkey. I did a search, but the only results were for tapering off meds, not gluten. I've been told by my GI doc that I have the worst case he's ever seen in nearly 20 years of practice (which I take with a grain of salt), and when he pulled up the CT scan of my abdomen, the lining of my jejunem was 15x normal size (he measured it with the drawing tool in the viewing program during a recent appointment).

The reason for starting the GFD immediately was that they saw a few abnormalities on the CT which could be cancerous, but there was so much inflammation the radiologist couldn't be sure. They've now tested the lymphocytes in the biopsies taken during my endoscopy + colonoscopy, and have determined I have enough variety that they're 99% sure there is nothing cancerous, but they want to reserve that 1% until the inflammation comes down enough for a second look. I thought it was reasonable enough to try the GFD again and do it cold turkey, but I'm at the point where if I have to live like this for the rest of my life, I'll take the lymphoma risk and drop the diet entirely. It's that bad. I lasted only 2 weeks on previous attempts.

The doctor put me on Entocort at Week 3, which I got a temporary lift from for about a week, but I've been seriously crashing and burning this weekend. Morbid depression, abdominal bloating, severe constipation that leaves rectal burning for hours, pitting edema, and barely able to function on nearly any level (except posting to the internet, apparently!) are just the beginning of the long list of symptoms that have appeared in the past six weeks. Needless to say, I'm questioning whether I'm better off going back on a semi-regular diet and not subjecting my body to this, which can't possibly be good for it. Perhaps going partial gluten-free for a while to taper down would be better.

Anyway, any thoughts on redoing this by tapering, or sharing personal experiences if you didn't go cold turkey from gluten would be appreciated. The doctor was so insistent on strict adherence to a GFD being immediately necessary, and nothing out there I could find that there was any other way to do this, caused me to go with it his way.

And hi there everyone, I don't usually enter a forum with such doom and gloom, it all just started spilling out! :)

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I felt the same way once I went gluten free. I was expecting to feel better within weeks. But at times I also felt that I was getting worse in some ways.

Once I hit the 6 month mark, the changes really started to show, my energy came back, I didn't have brain fog, and I almost always felt good.

Hang in there, and stay as gluten free as possible. The longer you are on the diet the easier it will be notice even if you have mistakingly had a trace of gluten in your diet. You start to become so good at it.

Good Luck

Krista

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Going gluten-free is quite a change in diet for most people. I suggest adding oatmeal to your daily routine, Oatmeal has lots of fiber and can be help to keep things moving during the adjustment. I like oatmeal with a little peanut butter, orange marmalade, and fruit bits or nuts added. It makes a quick easy breafast. You might be well off to start taking some vitamin D and B vitamins, along with calcium if you cut out dairy for a while.

I like to make large pots of rice and veggies with chicken or beef on the weekend and then freeze most of it. It is quick and easy to microwave the rice during the week.

Some people say that you go through a period of dysbiosis after going gluten-free. The way I understand that is your intestinal flora are out of balance. It can take a while for them to get settled down again. Dysbiois may explain the gas and bloating stuff. Pro-biotics may help, and avoiding sugary foods and candy for a bit.

Anyhow, just some ideas to think about. I hope you feel better soon.

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Be really cautious about going back "off the wagon" again. It feels worse each time you try to give up gluten, and then go back again. Also in the first of the 2 links there was a statistic:

"Mortality in patients with celiac disease and their relatives: a cohort study

This study compares 1072 celiac patients with 3384 of their relatives over 25 years.

In this study patients who were most likely to maintain a strict gluten free diet died half as often as their relatives over 25 years.

Patients who blew off the diet completely and ate "normally" died twice as often as their relatives.

Patients most likely to cheat on the gluten free diet died 6 times as often as their relatives.

Why? Is continued ischemia/reperfusion injury a factor for those who are only partly compliant ?

This is worrying. I know for example, that when I "cheat", my villi get healthy enough that they are able to recognise and let my know that they don't like lactose. When I have recently cheated, the villi are too damaged to respond, and I have no symptoms of lactose intolerance. That doesn't make me think I'd be better off eating gluten though! I'm just grateful that my system has recovered enough sensitivity to notice and inform me of other problems.

Are you eating other grains? it might be best to keep your diet very very simple for now, and grains are quite hard to digest. Since going gluten-free I can tell they do me no good, because my heart starts to pound, for ages after! Horrible, but I'm glad to be given the message at all. It just tells me something is healing in there.

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Going gluten-free is quite a change in diet for most people. I suggest adding oatmeal to your daily routine, Oatmeal has lots of fiber and can be help to keep things moving during the adjustment. I like oatmeal with a little peanut butter, orange marmalade, and fruit bits or nuts added. It makes a quick easy breafast. You might be well off to start taking some vitamin D and B vitamins, along with calcium if you cut out dairy for a while.

I like to make large pots of rice and veggies with chicken or beef on the weekend and then freeze most of it. It is quick and easy to microwave the rice during the week.

Some people say that you go through a period of dysbiosis after going gluten-free. The way I understand that is your intestinal flora are out of balance. It can take a while for them to get settled down again. Dysbiois may explain the gas and bloating stuff. Pro-biotics may help, and avoiding sugary foods and candy for a bit.

Anyhow, just some ideas to think about. I hope you feel better soon.

I would say, be careful of oats intially. I carried on eating oats after going gluten-free and not getting better and it wasn't until sometime later that I realised that there is a big risk with them of cross-contamination. Unless you can find a source that is guaranteed to not be contaminated with wheat, rye or barley gluten, then I would advise giving it a miss, at least until your gut has been healed for some time.

Most oat products are produced in the same factory, or even on the same machinery as other gluten products so you have to be careful. Once I removed the oat products I was a lot better. I can have them a bit now, nearly a year later, but I don't go overboard with them. I no longer react to gluten but still prefer to avoid it for the time being.

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I would say, be careful of oats intially. I carried on eating oats after going gluten-free and not getting better and it wasn't until sometime later that I realised that there is a big risk with them of cross-contamination. Unless you can find a source that is guaranteed to not be contaminated with wheat, rye or barley gluten, then I would advise giving it a miss, at least until your gut has been healed for some time.

Most oat products are produced in the same factory, or even on the same machinery as other gluten products so you have to be careful. Once I removed the oat products I was a lot better. I can have them a bit now, nearly a year later, but I don't go overboard with them. I no longer react to gluten but still prefer to avoid it for the time being.

All good advice here. I also just found and have been in touch with the head of the Celiac organization in my state. First thing she recommended was the book, "The Gluten Connection" by Shari Lieberman. I just read it. Wow, it covers all of it and also sets up a 3 part vitamin and other supplement schedule. I have been almost 6 months with a lot of down time and some good days and still discovering gluten containing things. Hoping to see big changes for the better soon.

How do you all feel about products that the company responds, "they are gluten free, and made on a gluten free line, but can not be labeled as gluten free because they are made in a factory that also has gluten?" Do any of you trust that? "Mrs. Dash" spice company told me that. Then that makes me wonder about "Mc Cormick" spices because they say all their pure spices are gluten free, and to check the ingredients on the "mixed" spices. They did not mention if they were all made in the same factory and now I am worried about cross contamination. I eat whole foods and make my own everything, so the spices would be the questionable things?

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I've never had a problem with any McCormick's product.

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Me either. McCormick is on my rather small list of absolutely trustworthy companies. I trust McCormick over most grocery store brands.

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I agree that oats are not for everybody. I have read that some people do have reactions to them. I think it is a small number of celiacs who react to oats, but if it is you that is what matters! So it probably is better to avoid them when starting the gluten-free diet, just in case you are one of the people who do have a reaction to them.

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In the months following my diet change, I my body went downright nuts. New and different health problems every week for a while.

It's 8 months since my diagnosis (bloodwork and biopsy), and my body is finally settling down in a lot of ways. I still have more headaches and neurological problems than pre-diagnosis, but my neurologist pointed out that my body was used to functioning in a chronic state of inflammation, and it is not uncommon to experience neurological changes with changes in inflammatory function. I still have a lot of health "quirks" but don't know if or how they relate to Celiac and the diet change.

Best of luck - hope things are getting better for you!

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Hi,

Here are a couple of articles to read that may explain what you're going through.

.

They say it always gets worse before it gets better, these will be a real eye opener!

.

Adverse Reactions to starting a Gluten Free Diet

.

Opiate Withdrawal from Gluten and Casein

.

Best Regards,

David

Thanks so much for posting these articles. It really helps me understand what is happening to my brain with the blood flow. I have been very discouraged lately as I have beee 5 months gluten free and my neurological problems are still pretty bad. I get a few good days, but mostly bad ones. I am so hoping the 6 month mark will show some good changes. Thanks again!

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I felt the same way once I went gluten free. I was expecting to feel better within weeks. But at times I also felt that I was getting worse in some ways.

Once I hit the 6 month mark, the changes really started to show, my energy came back, I didn't have brain fog, and I almost always felt good.

Hang in there, and stay as gluten free as possible. The longer you are on the diet the easier it will be notice even if you have mistakingly had a trace of gluten in your diet. You start to become so good at it.

Good Luck

Krista

Thank you for this post..it has really given me hope!!!

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In the months following my diet change, I my body went downright nuts. New and different health problems every week for a while.

It's 8 months since my diagnosis (bloodwork and biopsy), and my body is finally settling down in a lot of ways. I still have more headaches and neurological problems than pre-diagnosis, but my neurologist pointed out that my body was used to functioning in a chronic state of inflammation, and it is not uncommon to experience neurological changes with changes in inflammatory function. I still have a lot of health "quirks" but don't know if or how they relate to Celiac and the diet change.

Best of luck - hope things are getting better for you!

Thank you so much for this post.I've only been on gluten free diet 5weeks..tomorrow..my symptoms of gluten ataxia.Are worse than ever before..I was ready to quit..but I'm hanging in..now!

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Thank you so much for this post.I've only been on gluten free diet 5weeks..tomorrow..my symptoms of gluten ataxia.Are worse than ever before..I was ready to quit..but I'm hanging in..now!

You are responding to posts from 2009. I don't think either of them have been around in years. Might not get a response.

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    So, what’s the accuracy rate of a gluten-sniffing dog, anyway? From Mercola.com: Willow, a German shorthaired pointer, is another gluten-sniffing dog, in this case living in Michigan. Her owner, Dawn Scheu, says she can detect gluten with 95 percent to 98 percent accuracy. She worked with a trainer (the same one who trained Zeus) to teach her own dog to detect gluten, with excellent results.
    Gluten-sniffing dogs may detect gluten in amounts as small as .0025 parts per million with 95 percent to 98 percent accuracy. So, will Gluten Free Watchdog be warning against gluten-sniffing dogs anytime soon?
    Somehow, because Nima is a mechanical device made by a company, it's not so warm and fuzzy, not so feel-good. Maybe Nima needs to shape their device like a cute little doggy, or a Pez candy dispenser?
    But the data remains, as does the fact, whatever its drawbacks, anything that detects gluten like Nima does, as well as it does, is potentially very helpful for celiac disease in numerous situations. And it is extremely unlikely to do them any harm.
    Nima seems very much committed to transparency, scientific excellence, and continual product improvement. These are noble goals and generally a win for people with celiac disease. Think of it, just ten years ago, a portable gluten-sensor with the kind of accuracy Nima is reliably achieving would have been the stuff of fantasy. Yet here it is. More accurate than any gluten-sniffing dog, and for a couple hundred bucks. People with celiac disease are living in a very different world than just a few years ago.
    Nima did not have to publish its data, but it chose to do so, and in a reputable, peer-reviewed scientific journal. Nima conducted its research using solid scientific standards, and reported those results publicly. They explained their methodology and results, they acknowledged product limitations and expressed a commitment to improvement. How is this remotely controversial?
    The celiac disease community is fortunate to have companies committed to investing time and money into products and devices that help to improve the lives of people with celiac disease. We feel strongly that the perfect should not be the enemy of the good. Devices like the Nima gluten sensor can be helpful for numerous people with celiac disease.  
    Disclosure: Nima is a paid advertiser on Celiac.com. Celiac.com's advertisers do not influence our editorial content. 
    Read Nima’s full report on test data at: Food Chemistry.com Read Gluten Free Watchdog’s Statement on the Nima device at: Glutenfreewatchdog.org Read Nima’s Reply to Gluten Free Watchdog at: Nimasensor.com

    Edward R. Arnold
    To HAIT and Back: The Musings of a Thyroid Patient on the Vagaries of Medical Diagnosis and Treatment in America
    Celiac.com 09/14/2018 - If it is really true that nobody really wants to see a grown man cry, then certainly nobody would have wanted to hang around me near the onset of a long illness whose mystery would take 14 years to solve.
    It began subtly and mildly in 1989, my 43rd year. I had just finished a long and exhausting malpractice suit on behalf of my daughter, an attractive, genetically-normal child who had contracted quadriplegic cerebral palsy in a completely avoidable incident of post-natal asphyxia which had radically changed the nature of life for my spouse and I. By the time 1989 rolled around, I was thoroughly exhausted and carrying a toxic load of anger directed at an incompetent member of the medical profession who had never learned the importance of state-of-the-art skills in a profession that literally has the power of life, death, and disability.
    From late 1989 on through 1990, I experienced strange episodes of profound sadness, usually of one to two hours duration, that became increasingly disruptive to my ability to handle a job and child-care duties. Initially, these episodes seemed to come from nowhere. Later on, I found that playing certain pieces of music of which I was fond, would send me into such intense sobbing that I would be forced to pull over if this occurred while driving.
    By the time 1991 rolled around, something was to be added to these periodic bouts of intense sadness. Early in that year, my daughter became very ill, keeping both my spouse and I awake at night for weeks on end. By the time the problem was diagnosed to be a dental infection and dental surgery was done, I had begun to have a sensation of “hollowness”, as though I really weren’t part of this world, most of the time. In late summer of that year, a series of events in which my subconscious had informed me that a friend had a serious illness, sent me into a final “dive”: I simply stopped sleeping more than about two hours per night. When I first stopped sleeping, I soon noticed that even low-level use of alcoholic beverages would further interrupt sleep and throw me into a state in which I couldn’t think of anything but how terrible I felt. This state of pronounced alcohol intolerance would continue for 14 years.
    The final blow came in November 1991, when I went into a completely disabling panic/anxiety attack that sent me to bed, cowering. I had no alternative but to seek treatment from the psychiatric profession. Unfortunately, the first two psychiatrists prescribed drugs which either had no effects, or had effects that seemed worse than the problem they were supposed to solve. The third psychiatrist, whom I stuck with for about six months, came up with a treatment plan that was partially effective (but certainly not restorative). I stayed with this psychiatrist until it became clear that his treatment was equivalent to Jefferson Airplane singing “one pill makes you larger, and one pill makes you small”. I was being jacked up every morning by a toxic, activating SSRI anti-depressant so I could semi-function, and then dropped by benzodiazepenes every night into a non-restorative twilight sleep state.
    In retrospect, the most amazing thing about these first three psychiatrists was that not one of them ordered any tests of my endocrine function. Treatment consisted solely of a series of benzodiazepenes, anti-depressants, mood stabilizers, and anti-psychotics, administered in a trial-and-error fashion that yanked my psyche and body chemistry around like a manic pit bull on a two-foot leash.
    Throughout the latter part of 1992, I transitioned to care with my primary-care physician, mostly because I trusted him more than any of the psychiatrists I had seen up to that time. He was able to stabilize me with one of the old tri-cyclic anti-depressants, doxepin, along with low doses of valium. Although doxepin packs a big morning hangover for many who use it, and has very strong anti-cholinergic effects, its ability to put me out at night helped me function satisfactorily for much of the 1990s, even at doses as low as 10mg, once daily in the evening.
    In 1993 I consulted a highly-recommended psychiatrist, who was the first psychiatrist who actually looked at my thyroid function. When my TSH was measured at 3.5, without also checking my FT3 and FT4, that doctor concluded that thyroid was not my problem. Of course, standards of thyroid diagnosis and treatment have changed radically in the 12 years since. Under the new AACE guidelines, a TSH of 3.5 would now be suspect, because studies of patients with TSH over 3.0 have shown that most progress to hypothyroidism (i.e., TSH greater than 5.5). The new AACE guidelines would mean that further testing and evaluation should be done.
    Until the fall of 1997, I continued treatment with doxepin and intermittent valium, adding the practice of meditation to help calm myself. At that time, I came back to my primary-care physician with the symptom of profound exhaustion on top of the symptoms of insomnia, anxiety, and depression I had suffered for years. Fortunately, my GP was suspicious of thyroid function, and found that my TSH was floating above 8. Since this was well above the old/traditional limit of 5.5, he was ready to start treatment, with (as would be expected of most GPs) T4-only replacement.
    I began taking thyroxine (T4) shortly thereafter with high hopes. Initially, the treatment was successful: getting the added thyroxine into my system caused an immediate improvement in quality of sleep.
    However, the use of T4 did not turn out to be an unqualified success. After use of T4 for about a month, it was apparent that use of thyroxine alone did not produce a full recovery—I still suffered from anxiety, which the medication seemed to be increasing.
    In the meantime, hair loss became an issue. Several years earlier, I had noticed that running my fingers through my hair would produce an unpleasant sensation, almost as though the hair roots were tender. By the time of my 50th birthday, in 1996, I had noticed that my pillow was virtually coated with hair by the time I would remove it for washing. Unfortunately, nobody, including my GP, reminded me that hair loss is a prime symptom of hypothyroidism; and, like most males, I was ready to assume it was plain old male pattern baldness. By the time I was treated correctly and the hair loss stopped, I had pronounced thinning on the crown which was too advanced to be reversed in response to the treatment of the thyroid problem.
    In about 1998, I began experimentation with amino acids which was to last for almost seven years. I found that use of tryptopan, 5-HTP, and GABA could reduce (but not correct) the worst of my symptoms. In retrospect, though, use of amino acids is a poor substitute for a well-functioning thyroid, as well as being expensive and inconvenient.
    By the summer of 1999, I had reached a paradoxical situation. Experimentation had shown that my body needed on the order of 100 micrograms of thyroxine (T4) to keep my TSH down to a reasonable level; yet taking that much T4 was causing intense anxiety, requiring me to use strong sleeping medications. By late summer 1999, I had noticed another distressing symptom—my acute sense of hearing was being increasingly impacted by tinnitus. Evidently, the root cause that drove me into hypothyroidism, could also impact hearing.
    It was soon after a household move in the spring of 2000, that I had a partially-disabling attack of severe epicondylitis (more commonly known as tennis elbow). It was obvious that my body was no longer able to handle the short-term stresses of the hard physical work required by a move. This obvious physical symptom, accompanied by increasing periodontal issues and continuing mental issues, prompted me to seek other treatment.
    In September 2000, I began seeing a prominent “metabolic” doctor (M.D.) who is well known for his treatment of the metabolic disorders of diabetics. This doctor has written a number of books related to dietary changes and supplements needed to stave off metabolic degeneration as one ages. I was switched to Armour thyroid, and began treatment with other hormones (primarily hydrocortisone in low doses to supplement adrenal function, and pregnenolone). I took an enormous range of nutritional supplements recommended by this doctor, and also made radical changes in diet, which I maintained for nearly two years. Unfortunately, nothing seemed to really work—I did not obtain substantial relief of my symptoms. A thyroid test in Sep 2001 still showed unsatisfactory results—my TSH was 4.7, and my FT3 was below the bottom of the normal range.
    By the spring of 2002, I had decided I would have to take my care elsewhere if there were to be progress. After doing a brief telephone consult with a naturopath outside my home state, I began seeing a naturopath in my home town for whom I had obtained very positive recommendations via a web search. By March 2002, the naturopath had informed me that testing showed my hypothyroidism was due to anti-thyroid antibodies, i.e., my body was attacking its own thyroid gland. This condition is officially known as Hashimoto’s Autoimmune Thyroiditis (HAIT—as I now know, HAIT is the leading cause of hypothyroidism). I found this discovery quite amazing; how come the three endocrinologists I had seen between 1998 and 2002, had not given me this information? I was started on Thyrolar (synthetic combination T3/T4) by the naturopath, because she said that my body’s ability to make T3 may have been compromised by HAIT.
    Soon after beginning to see the naturopath, I learned that Dr. Stephen Langer of Berkeley, CA might have additional information on the problem I had been having with thyroid hormone causing anxiety in a hypothyroid patient. I had searched for information about this syndrome in a number of places but found nothing; for instance, the well-known book “Thyroid Solution”, by Ridha Arem M.D., contains no information on the condition. So, I consulted with Dr. Langer and learned that a small percentage of people with Hashimoto’s are exquisitely sensitive to even low doses of Thyrolar. In fact, the condition is rare enough that virtually no GPs, and only a few endocrinologists, know of its existence. Apparently, it does not have an official name attached to it. I decided to refer to it as “HAIT anxiety syndrome”, although there are a few doctors who prefer to refer to any neurological symptoms accompanying HAIT as “Hashimoto’s Encephalopathy”.
    I began to feel a little better between March 2002 and June 2003. I’m not sure why the message about gluten grains had not penetrated before, but by June 2003, the naturopath reminded me again that she had seen a positive result to a test for antibodies to gliadin (one of the two major proteins in gluten grains) in 2002, and that I really should consider removing gluten grains from my diet. This recommendation was based on three factors:
    I had antibodies to the protein gliadin found in wheat and other gluten grains such as rye and barley; I had anti-thyroid antibodies which were over the threshold that defines HAIT; Medicine really is an experimental science, and this experiment, in spite of its inconvenience, appeared to be worth a try. In a numbers sense, the response of my anti-thyroid antibodies to the removal of gluten grains from my diet was slow, but gratifying. My thyroperox test started off at 25, dropped to 19 within 6 months, 7 within 10 months, and became zero in less than 2 years. I eventually concluded that the removal of gluten grains from my diet was not all that difficult, partly because I wasn’t a celiac who had to worry about that last 1%. I also concluded that removal of gluten would have a positive health effect in terms of the reduced glycemic index of the foods I consumed.
    My symptomatic improvement thereafter was not immediate. It soon became obvious that T3/T4 treatment is not an exact science, and the proportion of T3 to T4 needs to be closer to the human body’s need, not the pig’s need (Both Armour and Thyrolar have the T3/T4 ratio of one part T3 for every four parts T4, typical of the pig’s biochemistry). For instance, in late 2003, my TSH had dropped very low, i.e. I had become clinically hyperthyroid due to excess T3 as revealed by a free T3 test. I have since gone through a couple more of these “yo-yo” episodes while being treated, which is a not uncommon event—thyroid treatment is as much art as science.
    Cost of treatment also became a problem. By June 2004, I began seeing a highly-recommended Physician’s Assistant (P.A.), who was known locally to be very good at thyroid treatment, and whose clinic would accept my health insurance. I continued to see the naturopath, although at less frequent intervals, since my insurance (like most) would pay nothing for naturopathy. The P.A. and the naturopath did not completely agree on treatment methods, particularly the use of adrenal supplements (hydrocortisone and DHEA in low/biologic doses) along with thyroid supplements; but they were both in agreement that I should continue to pursue combination T3/T4 therapy. So, I blended recommendations from the two for awhile, transitioning to T3 and T4 in separate tablets of Cytomel and Synthroid, so the percentage of T3 could be altered.
    I gradually transitioned off adrenal supplements during 2005, and very gradually increased my T3/T4 supplementation over the course of the year. Finally, by September 2005, I began to realize that I truly had recovered my health—I had episodes of feeling really good again! Still, my sleep was not perfect—I had discovered what Ridha Arem M.D. has documented in the book Thyroid Solution: a return to the euthyroid state may not immediately eliminate all symptoms. After going to a small dose of the atypical anti-depressant mirtazapine, I finally could feel, every day, like I had in my 30s. Unfortunately, it had taken an agonizing 14 years to get there.
    Today, I religiously take my 10 micrograms T3, and 75 micrograms T4, split into two doses each day. I also religiously avoid all traces of gluten grains in my diet because I now understand that the gluey, hard-to-digest proteins in them are a substance which can cause major metabolic disruption. Like the co-author of the book “Dangerous Grains”, Ron Hoggan, with whom I have corresponded, I have come to realize that our society’s over-use of a potentially toxic substance isn’t just dangerous to the 1 in 133 people who have full-blown celiac disease—it can cause a very poor quality of life for the approximately 1 in 5 who have gluten intolerance. I have also come to the realization that, to those few who are unlucky enough to encounter the HAIT Anxiety Syndrome, you may require combination T3/T4 therapy to feel better; and, you may never feel as well as you did when you were young, unless you find a way to stop your immune system from waging war on your thyroid.
    Most of all, 14 years after it started, I feel as though a significant part of my life has been taken from me. I was unable get joy or pleasure from life, I was unable to work effectively, and I was unable to be the kind of parent I could have been between my 45th and 59th years of life.
    I never imagine that I would be looking forward to the relatively advanced age of 60. However, given that I now feel better than I did at anytime between the ages of 43 and 59, 60 looks like a good place to be.
    Summary:
    In retrospect, the most important things I ended up learning from 14 years of very unpleasant experience are:
    If you have psychiatric symptoms, e.g., depression, anxiety, panic disorder, etc., make sure your endocrine system is evaluated, with thyroid testing as the cornerstone. Beware of doctors who offer an antidepressant first thing, without endocrine evaluation. The emotional/psychiatric effects of hypothyroidism are just as important, and just as damaging, as the physical ones. Unfortunately, many MD’s focus on the physical. If you want to get well, you have to apply all your skills and intelligence to investigating your problem, which most MD’s may not understand. You may also have to turn to “alternative” practitioners. If your TSH is above 3.0, or maybe even 2.5, and your doctor will not do more comprehensive testing (e.g. FT3/FT4), and/or try a test run of thyroid supplementation, find another doctor. If your doctor diagnoses you as hypothyroid, demand that a test for anti-thyroid antibodies be done. If you have any antibodies, even if they are under the threshold where HAIT is considered to start, get testing for allergy to foods, and testing for allergy to common environmental toxins if food testing reveals nothing. You may find, as did I, that you won’t feel as well as possible until you free your body from antibodies.

    Jefferson Adams
    Lawsuit Claims Bob’s Red Mill Ignores RoundUp Pesticide in its Oat Products
    Celiac.com 09/13/2018 - Bob’s Red Mill finds itself under fire by two women who claim the company knowingly hides the presence of an allegedly cancer-causing weed killer in its steel cut oat and rolled oat products, and falsely advertises those products as healthy. 
    Tamara Frankel and Natasha Paracha filed a federal class action in San Francisco, alleging that parent company Bob’s Red Mill Natural Foods knows that its oat products contain or likely contain glyphosate, but fails to disclose it on the label. The women cite a recent report by the Environmental Working Group, an environmental research and advocacy group, which claimed to find traces of controversial herbicide glyphosate in Cheerios, Quaker Oats and other oat-based breakfast foods. The women contend that Bob’s uses labels such as “gluten free,” “wheat free” and “purity tested,” which lead consumers to falsely believe them to be healthy.
    Both U.S. and European regulators have concluded that glyphosate is safe, while that World Health Organization’s International Agency for Research on Cancer classifies it as a probable human carcinogen.
    Bayer subsidiary Monsanto, maker of the glyphosate-based herbicide Roundup has faced numerous lawsuits over its product.  A San Francisco jury recently found that exposure to Roundup caused the cancer of a school groundskeeper, and awarded him $289 million in damages. Shortly after that verdict, the Environmental Working Group released a report claiming that 31 of 45 oat-based food samples tested positive for glyphosate, and that levels exceeded safety limits of 160 parts per billion.
    EWG applies a more stringent standard than the 2 mg/kg/day of glyphosate standard used by the U.S. Environmental Protection Agency, and the 1.1 mg per day standard used by the State of California.
    Frankel and Paracha are represented by Patricia Syverson of the San Diego law firm Bonnett, Fairbourn, Friedman & Balint.
    Stay tuned for more developments on this and related stories.

  • Posts

    • Victoria, It can be.  Up to 40% of Celiac's have some Neurologic/Psychriatric issues. Here is the research on the anxiety and depression issues common in celiac's entitled "Neurologic and Psychiatric Manifestations of Celiac Disease and Gluten Sensitivity" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3641836/ I used to have terrible anxiety (un-natural anxiety) almost to the point of a panic attack. Taking Zinc lozenges (they self regulate) with a metalic taste in your mouth helped many of my anxiety issues. Later (or around the same time I cant remember now) I learned magnesium and B-Vitamins could also help. Taking a B-complex as I think Ennis_tx mentioned (in another thread) and taking Magnesium Citrate helped many of my depression issues. Here is a good article that explains some of the vitamins/minerals that some one can take that can help anxiety and depression issues entitled "The Role of Vitamins and Minerals in Psychiatry" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3046018/ I hope this is helpful but it is not medical advice. Low Iron is also common (IDA) in celiac's and has been shown to be associated with panic attacks. Here is the research on low Iron and B-6 entitled "Low serum concentrations of vitamin B6 and iron are related to panic attack and hyperventilation attack" https://www.ncbi.nlm.nih.gov/pubmed/23603926 I didn't know any of this then.  But it is not all in your head as doctor's some times are prone to say. The anxiety is real! Again I hope this is helpful and good luck on your continued journey. There is hope I used to be you!  Waking up on the "wrong side" of the bed. . . days in a row never knowing why? At least you know how gluten is effecting you or are at least right to suspect it and you can avoid it. . . . And sometimes just avoiding the issue once you have identified it is easier than dealing with the after math. And why would you want too anyway? It is not all in your head!  Be your own advocate! Note/Remeber the research was on the "Neurologic and Psychiatric Manifestations of Celiac Disease and Gluten Sensitivity"  which you seem to have.  You don't need to be full blown (officially) diagnosed celiac for gluten to affect you poorly as you are noticing. Again I hope this is helpful but this is not medical advice just some of the things I found helped me.  And if they help you.  Pay it forward and tell others. I wish I knew some of these things years and years ago as many of us do on this forum and why we still participate/share our experiences to help those still looking for answers sadly we had to find out on our own too often! 2 Timothy 2: 7  “Consider what I say; and the Lord give thee understanding in all things” this included Posterboy by the grace of God,
    • Hi Victoria! Consider getting retested for celiac disease provided you are still eating gluten daily.  Children of celiacs should be retested every few years even if they have no obvious symptoms.   https://www.gluten.org/branchnews/relatives-tested-celiac-disease/ https://www.ncbi.nlm.nih.gov/pubmed/24552206
    • Hi, I wanted to submit some new info on the altoids smalls. They have been banned previously by celiacs due to wheat maltodextrin listed as an ingredient. However, I just noticed that on their tin, there the wheat maltodextrin is no longer listed in the ingredients. So, I wrote to wrigley's asking about that. Here's the replyi received: "Thanks for taking the time to contact the Wrigley Company.  We really care about your questions and feedback. We had changed the formula with in the last couple years were we took the wheat maltodextrin out of the Altoids Smalls Mints. If the old tin you have says wheat maltodextrin it would be the old formula. If you have any additional questions or comments feel free to contact us at 1-800-WRIGLEY (974-4539)  Monday through Friday from 8:30 a.m. to 5 p.m. CST or visit us at www.wrigley.com." I thought that was great. But I wrote them again because I was still wondering about any other gluten possibly hiding in there. Here's their response: "Thanks for taking the time to contact the Wrigley Company.  We really care about your questions and feedback. We are not using any oats, rye, barley, gluten or wheat in the Altoids Smalls Mints. The tin will not say gluten free on them. Because the ingredients are not tested or certified as gluten free. The only two products that have ever been certified gluten free are our Skittles Candy and Starburst Candy. Which you will see the gluten free statement on the outer packaging. If you have any additional questions or comments feel free to contact us at 1-800-WRIGLEY (974-4539)  Monday through Friday from 8:30 a.m. to 5 p.m. CST or visit us at www.wrigley.com." So it sounds like they are most likely ok now, except for the most sensitive of us. Just thought I'd share the info. 
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